World Microbiome Day

Wednesday, 27 June marks World Microbiome Day. 

Wednesday, 27 June marks World Microbiome Day. The aim for the day is to showcase the vibrant and diverse worlds of microbiomes and to encourage public dialogue on their critical importance to human, animal and environmental health.

This year’s theme is “Mind our Microbes”. Microbes have gained a bad reputation due to their ability to cause disease, but in reality, the vast majority of microbes do not cause any harm and are essential for plant, animal and human life. Microbiomes can be found in many parts of the human body such as in the skin, lungs, mouth and gastrointestinal tract - the most studied area of human microbiome. The gut microbiome is essential to humans as it carries out many vital functions in the human body such as:
  • Helping digestion through breaking down foods
  • Immune system development; preventing infections by competing with pathogens (disease causing microorganisms)
  • The synthesis of essential nutrients such as Vitamin K and B12 as well as short chain fatty acids
Various diseases, such as obesity, inflammatory bowel disease and asthma have all been associated with a reduction of gut microbiome and healthy aging may be compromised by gut bacteria deficits.  Scientists have also found that gut microbiomes are able to influence brain function and behaviour. The gut is sensitive to emotions such as anger, sadness and anxiety which may be due to the brain-gut-microbiome axis which is a three-way communication system between the brain, the gut and its residential microorganisms. With further research, scientists are learning more about microbes and microbiotas, and it is becoming increasingly clear that one of the critical aspects to good health is microbial diversity. Healthier humans tend to have a greater variety of microbes in their guts. For our continued wellbeing, it is important that awareness is raised during World Microbiome Day and that our microbes are protected. Find out more about World Microbiome Day World Microbiome Day is co-ordinated by APC Microbiomes Ireland. 

UEG Digestive Health Month

Taking a look back at the highlights of UEG Digestive Health Month

During the month of May, UEG celebrated their third annual Digestive Health Month in order to raise awareness of a variety of chronic digestive diseases.

There were three main events during the month, which included two awareness days; World IBD Day on 19 May and World Digestive Health Day, coordinated by the World Gastroenterology Organisation (WGO), on 29 May. New to this year’s agenda was the very exciting launch of the MEP Digestive Health Group in the European Parliament on 15 May. The MEP Digestive Health Group will aim to serve as a platform for exchange between the scientific community and policy makers to ensure that digestive health becomes and continues to be an integral part of the EU agenda. The successful launch was co-hosted by MEP Pavel Poc and MEP Nessa Childers and took place at the European Parliament in Brussels. To support the MEP group launch, a report on the state of chronic digestive diseases across Europe, focusing on the continent’s current issues, challenges and inequalities, was also published. View the MEP report On 19 May, World IBD Day took place with the aim to raise awareness of inflammatory bowel disease. UEG worked collaboratively with the European Federation of Crohn’s and Ulcerative Colitis Associations (EFFCA) to help spread awareness of inflammatory bowel disease and how this is impacting public health. To finalise the month, World Digestive Health Day took place on 29 May, which is organised each year by the WGO. The theme changes each year, and this year’s focus was on viral hepatitis B and C. Hepatitis B and C are the most common forms of the virus in Europe. In support of the day, UEG produced a new infographic on hepatitis B and C across Europe. The infographic was produce in collaboration with the WGO, the European Association for the Study of the Liver (EASL) and the European Liver Patients’ Association (ELPA). View the infographic UEG would like to thank all of the organisations and stakeholders that attended the launch of the MEP Digestive Health Group in Brussels and for those that have engaged and supported Digestive Health Month on social media. If you would like to see more of went on during the month of May, visit UEG’s Twitter and view the discussions under the hashtag #DigestiveHealthMonth. Visit the WGO website Visit the EFFCA website Visit the ELPA website Visit the EASL website

Questions Answered: Hepatitis

Leading hepatitis experts answer questions for World Digestive Health Day 2018.

Organised by the World Gastroenterology Organisation, World Digestive Health Day occurs every year on May 29 to help raise awareness of a different chronic digestive disease. This year, the focus is on hepatitis B & C virus infections.

In support of the day, leading experts answer frequently-asked questions on hepatitis, including the symptoms, how to minimise your risk and the outlook for patients with the virus. Find out more about World Digestive Health Day 2018

Markus Peck

Markus is the Chair of the UEG Public Affairs Committee and former Secretary General of the European Association of the Study of the Liver (EASL).

Helena Cortez-Pinto

Helena is a member of the UEG Public Affairs Committee and is the EU Policy Councillor for EASL. Visit the EASL website


What is hepatitis?

Helena Cortez Pinto: Hepatitis is an inflammation of the liver that can be either acute or chronic. Viruses, such as Hepatitis A, B, C, D, or E, can cause it. In other cases, mechanisms of self-aggression are responsible for auto-immune forms of hepatitis. Among viral hepatitis, hepatitis A only presents in acute forms, while hepatitis B, C, D or E can be acute or progress to chronic forms.

What are the most common symptoms of hepatitis? 

Helena Cortez-Pinto: The most common symptoms of acute hepatitis are jaundice (yellow colour of the eyes and skin), fatigue, and a slight discomfort in the upper right quadrant. However, it can also present with symptoms very similar to flu, such as fever, tiredness and muscle pain. Urine may also become darker, and lack of appetite as well as nausea can be present.


Is there a cure for hepatitis?

Helena Cortez-Pinto: Yes. Regarding hepatitis A it cures spontaneously in the vast majority of cases and consequently no treatment is needed. With regard hepatitis B, the majority of acute hepatitis cases also cures spontaneously. When this does not happen and a chronic hepatitis develops, a treatment is available that keeps the disease controlled. For hepatitis C, there is now the availability of drugs that allow the cure in about 97% of chronic hepatitis C cases, using 8 to 12 weeks treatment with oral drugs. Regarding hepatitis D, the treatment is so far not very effective. Hepatitis E usually does not need treatment, but if needed there is a treatment that is effective.


Who is most at risk of contracting hepatitis?

Helena Cortez-Pinto: Regarding Hepatitis A, it is transmitted through ingestion of contaminated food and water or through direct contact with an infectious person, so those in higher risk are injecting-drug users, men who have sex with men, as well as people travelling to areas of high endemicity. Regarding hepatitis B, sex-related professionals, those who engage in unprotected sexual activity, as well as people who inject drugs are those most at risk.  The major risk for hepatitis C is being through injecting drugs or engaging in unsafe sexual practices. 


How can I minimise my risk of contracting hepatitis?

Helena Cortez-Pinto: The best way to minimise the risk of hepatitis A and B is through vaccination, which is very effective. Regarding hepatitis A, those travelling to areas of high endemicity, as well as men who have sex with men, should be vaccinated. Hepatitis B vaccination is part of the national vaccination programme in a large number of countries, implying vaccination of all new-borns. However, adults frequently are not included in these programs, so if they belong to a risk profession or if they are planning to incur in risky conducts, they should be vaccinated. Since there is no vaccination for hepatitis C, the best prevention is not to incur in risky behaviours, such as drug injection. People who inject drugs should be extremely careful with all the material used and not share any of the material that they use.


What is the current treatment process for someone that has hepatitis? Are they different for the different types?

Helena Cortez-Pinto: As mentioned, hepatitis A needs no treatment. Hepatitis B, may need treatment in some acute forms, but that is rare. The treatment for chronic forms may include an injectable drug, for a limited time, but in most cases an oral treatment is used that is well tolerated. This treatment keeps the disease controlled, although a cure is not achieved in most cases. Regarding hepatitis C, we now use an 8 to 12-week treatment with oral drugs, that is effective in more than 95% of cases, leading to the cure of hepatitis C. Regarding hepatitis D, the treatment is so far not very effective, and is usually done with an injectable drug for a limited period of time. Hepatitis E usually does not need treatment, but if needed there is an oral treatment that is effective and time-limited.


Are all forms of hepatitis spread in the same way?

Markus Peck: No, hepatitis A and E are usually spread through polluted water and everything that is produced or washed with it. Hepatitis B, D, and C are spread through blood and blood products, like blood and plasma transfusions or injections with contaminated syringes or other contaminated medical equipment. Hepatitis B (and with it, sometimes D) is also transmitted sexually, which for Hepatitis C is only reported with sexual practices causing mucosal trauma.


What form of hepatitis is most common in Europe and why is this?

Markus Peck: For acute viral hepatitis, this is hepatitis A. Its incidence is difficult to estimate, since it can have quite an indolent course, especially in children, which makes it difficult to differentiate from a flu-like infection. Chronic hepatitis B and C have a fairly balanced prevalence in Europe, with an estimated 4.7 million chronic Hepatitis B and 5.6 million chronic Hepatitis C cases in the EU + European Economic Area (EEA), according to the latest estimation form the European Centre of disease control (ECDC) from 2016. There are large geographic differences with chronic hepatitis B being more prevalent in Southern and Eastern Europe, especially in countries where there is no systematic childhood and risk-group vaccination. Hepatitis C is also more prevalent in Southern and Eastern Europe but is also highly prevalent in some communities in Western and Northern Europe, most notably in PWID’s and increasing also in the MSM-community.


What percentage of hepatitis patients require a liver transplant?

Markus Peck: About 20% of patients with chronic viral hepatitis will go on to develop cirrhosis within 20-30 years of chronic activity and lack of treatment, and will develop decompensation or liver cancer within another 10 years, which would make some of them candidates for liver transplantation. Only a minority of those requiring a transplant will actually be able to receive one due to either comorbidities, advanced age, or lack of organ availability. It is difficult to estimate the percentage of patients with chronic hepatitis receiving a transplant and I have not seen any reliable data on this. In addition, there is great geographic variability within Europe regarding the prevalence of chronic viral hepatitis and access to liver transplantation alike. In a country like Austria, with an estimated prevalence of chronic viral hepatitis of 0.3%, the rough estimate assuming a very low number of new infections and no effective treatment would be about 5% over the course of 20 years. With effective treatment as available today, this percentage will be much lower, as already evidenced by the declining number of patients with chronic viral hepatitis on the liver transplant waiting lists.


Can hepatitis be fatal?

Markus Peck: Yes, even acute hepatitis can be fatal but fortunately only in a small number of cases (<1% of acute infections) by causing acute liver failure. This is more common when acute hepatitis occurs against the background of an already damaged liver and can occur with any type of acute hepatitis (A-E). Chronic hepatitis can be fatal by causing cirrhosis and end stage liver disease as well as liver cancer.


What are your predictions for hepatitis treatment in the future?

Markus Peck: Hepatitis A and E usually only require symptomatic treatment and are self-limiting in most instances. Treatment of chronic viral hepatitis is already very effective; hepatitis C can be cured completely and hepatitis B can be very well controlled with continuous intake of oral drugs. Complete cure from hepatitis B is still an elusive goal but there are many efforts ongoing to achieve it. The but theme today is the quest for global elimination of viral hepatitis, as set as a target by WHO. In order to achieve that, we not only need effective drugs but also a whole range of comprehensive matters that include prevention (including vaccination), finding of infected individuals and linkage to care. Whether this can really be achieved until 2030 in many countries remains to be seen.

World Digestive Health Day Infographic

View our new hepatitis infographic for World Digestive Health Day 2018

In support of World Digestive Health 2018, UEG, along with EASL, ELPA and the WGO, have produced a new infographic on hepatitis B & C virus infections.

World Digestive Health Day occurs annually on May 29 and focuses on a new digestive disorder each year. The theme for this year is hepatitis B and C virus infections, which are the most common forms of hepatitis in Europe. There are 29,000 newly diagnosed cases of hepatitis C in the EU every year and 15 million Europeans are estimated to be infected with the virus. With regard to hepatitis B, 13 million Europeans are estimated to be infected. Despite high incidence rates and the alarming complications that can develop from hepatitis B and C, which include chronic liver disease, liver cirrhosis and hepatocellular carcinoma, predictions estimate that just one in five newly infected people become aware of their virus at the time of infection. Even though hepatitis B and C are such large public health issues in Europe, over half of European countries lack national strategies to address them. This information, and further statistics on hepatitis B and C virus infections, can be found in a new infographic produced by UEG for World Digestive Health Day 2018. UEG would also like to thank the support of EASL and ELPA in producing this infographic, as well as endorsement from the WGO, who organise World Digestive Health Day every year. UEG hope that this infographic can help to raise awareness of hepatitis B and C and encourage organisations to view, download and share the resource. Download the infographic

About the World Gastroenterology Organisation (WGO)

With over 50,000 individual members worldwide, the World Gastroenterology Organisation is a federation with over 100 Member Societies and four Regional Associations. Visit the WGO website

About the European Association for the Study of the Liver (EASL)

EASL has evolved into a major European Association with international influence dedicated to the liver and liver disease. EASL has over 4,000 members from all over the world and provides an annual platform, The International Liver Congress, for 11,000 liver experts to meet and discuss latest scientific research.  Visit the EASL website

About the European Liver Patients’ Organisation (ELPA)

ELPA's aim is to promote the interests of people with liver disease and in particular: to highlight the size of the problem; to promote awareness and prevention; to address the low profile of liver disease as compared to other areas of medicine such as heart disease; to share experience of successful initiatives; to work with professional bodies such as EASL and with the EU to ensure that treatment and care are harmonised across Europe to the highest standards. Visit the ELPA website

Questions Answered: Inflammatory Bowel Disease

Leading Inflammatory Bowel Disease experts answer questions for World IBD Day 2018.

In recent decades, the prevalence of inflammatory bowel disease (IBD) has increased across Europe.

The two most common forms of IBD are Crohn’s disease and ulcerative colitis, which are chronic inflammatory conditions that often affect people during their early adulthood. World IBD Day takes place on 19 May every year. To mark the occasion this year, a panel of leading experts answer frequently asked questions on IBD.

Philippe van Hootegem

Philippe is a member of the UEG Public Affairs Committee as a representative from the European Crohn’s and Colitis Organisation (ECCO). He is a Consultant Gastroenterologist at the Sint-Lucas General Hospital, Bruges, Belgium and Associate Professor at the Faculty of Medicine of Leuven University, Belgium.  Visit the ECCO website

Gigi Veereman

Gigi is a member of the UEG Public Affairs Committee and a Paediatric Gastroenterologist at the University Hospital Brussels, Kids-z Castle and Professor at the Free University of Brussels, Belgium. Gigi is also the Secretary General of the European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN). Visit the ESPGHAN website

Maciej Salaga

Maciej is a member of the UEG Public Affairs Committee and works in the Department of Biochemistry, Medical University of Lodz, Poland. Maciej sits in the UEG Public Affair Committee as a representative from the UEG Young Talent Group. Visit the Visit the Young Talent Group website

Luisa Avedano

Luisa is the CEO of the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA). EFCCA’s main objective is to improve the well-being of people with IBD of all ages. Visit the EFCCA website

What is the cause of IBD and is there a cure for the disease?

Maciej Salaga: The pathogenesis of IBD is not fully understood. Importantly, environmental and infectious factors, together with genetic predisposition lead to elevated levels of pro-inflammatory cytokines in the course of IBD. Philippe van Hootegem: The exact causes of Crohn’s disease and ulcerative colitis are not yet known.  At present, it is assumed that the disease is caused in people who have a hereditary predisposition, by a disproportionate reaction of the bowel immune system against microbes that penetrate the intestinal wall. As the exact cause of the disease is not fully understood, currently there is no available definitive cure for the disease.

Are there any risk factors that I should be aware of that could cause or exacerbate IBD?

Luisa Avedano: Studies indicate that the inflammation in IBD involves a complex interaction of factors; the genes the person has inherited, the immune system, and something in the environment. Crohn’s disease tends to run in families. Studies have shown that 5% to 20% of affected individuals have a first-degree relative (parent, child or sibling) with one of the diseases. The risk is greater with Crohn’s disease than ulcerative colitis and he risk is also substantially higher when both parents have IBD. The environment in which you live also appears to play a role. IBD is more common in developed countries rather than undeveloped countries, in urban rather than rural areas, and in northern rather than southern climates. Maciej Salaga: The impact of diet and smoking on IBD is unquestionable. High intake of monosaccharides and saturated fats relate to increased risk of IBD.

How does IBD develop over time? Will I have to undergo surgery or need a stoma?

Gigi Veereman: Each patient has his own particular course so predictions are often difficult. A stoma is a very unlikely occurrence in childhood IBD. Luisa Avedano: Recent advances, such as the development of biological drugs, have produced increasingly effective medical therapies for Crohn’s Disease. There have also been changes in the way surgery for Crohn’s is managed. For example, extensive resections (removal of diseased sections of the intestine) are now less common. Surgery remains an important treatment option, often in combination with medical therapies. It is estimated that up to eight out of 10 people with Crohn’s will need surgery at some point in their lives. 

I have tried a number of IBD medicines, but nothing has worked for me. What can I expect from any new anti-IBD medicines?

Maciej Salaga: There is now a lot of hope for those who suffered from ineffective pharmacological treatments. The recent introduction of new generation of biological drugs, such as anti-integrin antibodies, have already made a significant change in the anti-IBD drug scene. These molecules are more selective than their predecessors and cause less adverse events. I believe that in the next 5 to 10 years, we will see even more new medicines with improved effectiveness and safety profiling. Philippe van Hootegem: Traditionally the main treatment goal for IBD remains to achieve and maintain remission and ultimately to ensure optimal quality of life. The “classical” treatment with corticosteroids is efficient but has important side effects when used long-term. Many new drugs have been developed in the last twenty years (including infliximab, adalimumab, vedolizumab, ustekinumab) that can help to obtain a steroid free remission and also to achieve disappearance of the inflammatory injuries in the gut. These drugs are efficacious and have an acceptable safety profile. Nevertheless, they do not work equally well in all patients or lose their efficacy after a certain amount of time. Fortunately, new promising medications are being developed at a high rate, including risankizumab, JAK inhibitors and SP1-receptor inhibitors. They will probably be able to cover some unmet needs and help some of the patients. 

Am I still able to take part in sport or physical exercise if I have IBD?

Gigi Veereman: Absolutely. It is recommended that patients avoid exhaustion when exercising, but regular physical activity is definitely advised. Lisa Avedano: Many people living with IBD are able to lead an active lifestyle and participate in challenging sports competitions. Many of IBD patients regularly participate in activities such as marathons, triathlons, long trekking trips and sailing.

Is there a possibility that IBD could develop into cancer?

Gigi Veereman: Yes, chronic inflammation is a risk factor for cancer. In ulcerative colitis, screening begins after 10 years into the disease. For children who develop the disease at an early age, screening may also be needed in adolescence. Philippe van Hootegem: Patients with IBD may have an increased risk of colorectal cancer. This depends mainly on the severity, localisation and duration of the inflammation. Crohn’s disease or ulcerative colitis patients with long-standing and pronounced inflammation of the large intestine have a significantly higher risk of cancer than patients with Crohn’s disease and only damage to the small intestine. There also seems to be a higher risk in patients developing strictures or with so-called inflammatory polyps. The presence of biliary tract inflammation that can occur in combination with IBD is an important risk factor for colon cancer. In order to prevent colorectal cancer as much as possible, it is highly recommended to regularly perform an intestinal examination (such as colonoscopy surveillance) in patients with an increased risk, with intervals of every 1, 3 or 5 years, depending on the risk assessment.

Will I have to take care when travelling abroad if I have IBD? Will there be any problems in getting necessary vaccinations?

Lisa Avedano: Having IBD will not keep you from travelling abroad. All that is needed is a little extra planning, such as consulting with your doctor about necessary vaccinations, making sure you have suitable health insurance, taking enough medication and bringing relevant medical documents with you. Philippe van Hootegem: With a good preparation IBD patients can visit virtually every travel destination. A few practical tips include discussing your travel plans with your doctor in good time, ensuring you get enough rest and sleep during your stay and avoid foods and drinks that you do not trust. For tropical destinations, it is mandatory to check the required vaccinations and to ask whether you can get them. You should not get vaccines with live attenuated viruses, such as yellow fever vaccine, if you take medication that suppresses the immune system. Ask your doctor if you should take antibiotics and emergency medication for flares with you on the trip. It may also be useful to take a recent medical report, translated into English or in the language of your destination.

As a result of my IBD I feel constantly tired – is there anything I that I can do to stop this?

Lisa Avedano: Fatigue in IBD is very common – over three-quarters of people experience fatigue during an IBD flare-up. However, there are a series of actions you can take to reduce or better manage your disease. Speak to your doctor or IBD nurse about this and not just assume that it´s part of the disease. They will be able to provide you with the proper care you need. Philippe van Hootegem: Many patients with IBD complain of fatigue. This can due to a variety of factors such as the presence of active disease, anemia due to deficiencies in iron or vitamin B12, side effects of medication, an unhealthy lifestyle, anxiety, stress or depressive tendencies not uncommon in chronic diseases. Sometimes none of these possible causes is present and the patient remains tired. There is no specific medication against this. Healthy eating, sufficient exercise and enough sleep can all help. Talk about it with your doctor, family and friends. This may not be able to take away the fatigue, but perhaps can make it more bearable.

Can I become pregnant with IBD and, if so, will I face any complications during pregnancy as a result of my IBD? Or is there a chance that I could pass my disease onto my children?

Philippe van Hootegem: IBD does not in itself cause reduced fertility in men or women. However, active disease, poor nutritional status, some medications and previous surgery may have a negative role in fertility. Active IBD during pregnancy increases the risk of miscarriage, preterm birth or low birth weight. It is therefore important to have as inactive a disease as possible before becoming pregnant. Discuss the pregnancy wishes with your doctor in good time. In principle, pregnant women can continue to take most IBD drugs, with the absolute exception of methotrexate. Delivery can usually happen naturally. Women with IBD can breastfeed their baby but meanwhile, some medication is best avoided. Luisa Avedano: Parents with IBD are slightly more likely to have a child who develops IBD. How likely seems to vary with the condition and is also higher in some population groups.  Estimates vary but research suggests that in general, if one parent has ulcerative colitis, the risk of their child developing IBD is about 2%. For Crohn’s disease the risk is 5%. If both parents have IBD, the risk can rise to above 30%. However, we still cannot predict exactly how IBD is passed on. Even with genetic predisposition, other additional factors are probably needed to trigger IBD. 

Is there a specific diet that I could follow that would ease the symptoms of IBD?

Maciej Salaga: Certain foods have been shown to be either beneficial or detrimental for IBD patients, indicating the need for the development of individualized diets. For instance, high vegetable intake has been associated with decreased risk of ulcerative colitis, whereas a greater intake of fibre and fruit is associated with decreased risk of Crohn’s disease. Results of a recent survey organized by Crohn’s and Colitis Foundation of America showed that yogurt and rice were more often reported to improve symptoms whereas fruits, vegetables, high fibre foods, red meat, fried food and alcohol were more frequently reported to worsen the symptoms. Gigi Veereman: Some diets are believed to relive IBD inflammation. For example, the specific carbohydrate and following a gluten free diet – studies are ongoing to study their effect. An exclusive liquid milk based diet is proven effective to obtain remission in children with Crohn’s disease, although it is unfortunately virtually impossible to maintain such a diet permanently. Patients with IBD may suffer from IBS symptoms such as lactose intolerance or other food intolerances. Therefore, a specifically adapted diet may be helpful and the guidance of a dietician or nutritionist is always recommended. 

International Coeliac Day 2018

International Coeliac Day takes place on 16 May, 2018

International Coeliac Day takes place on 16 May, 2018. Organised each year by the Association of European Coeliac Societies (AOECS), the day aims to raise awareness of the disease amongst the general public and healthcare professionals.

Coeliac disease is the most common food-related chronic disease among children in Europe, with prevalence rising in recent decades. However, up to 80% of coeliac disease cases remain undiagnosed in children, which can lead to many serious associated health complications. Symptoms include diarrhoea or constipation, recurrent abdominal pain or bloating, tiredness and growth problems. The only current treatment for the disease is a strict, lifelong compliance to a gluten-free diet, which achieves remission of the symptoms and prevents further complications. This year, the AOECS have collaborated with the European Society for Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN) to call on the EU and its Member States to employ effective detection programmes to achieve early diagnosis of coeliac disease in children. The two societies have come together to produce a manifesto for change, outlining three steps that must be taken throughout Europe to promote earlier diagnosis:
  1. Greater public awareness of paediatric coeliac disease
  2. Greater healthcare professional awareness of coeliac disease, its symptoms and the high-risk groups
  3. Establishment of national detection programmes for early identification of paediatric coeliac disease
ESPGHAN and the AOECS would like to invite patient organisations to join them in calling for this change on International Coeliac Day. UEG support this call for change and encourage patient organisations, patients, members of the public, healthcare professionals and policymakers to also show their support in facilitating earlier diagnosis of the disease in children. View the manifesto for change and an infographic on paediatric coeliac disease About ESPGHAN The European Society for Paediatric Gastroenterology Hepatology and Nutrition (ESPGHAN) is a multi-professional organisation whose aim is to promote the health of children with special attention to the gastrointestinal tract, liver and nutritional status, through knowledge creation, the dissemination of science based information, the promotion of best practice in the delivery of care and the provision of high quality education for paediatric gastroenterology, hepatology and nutrition professionals in Europe and beyond. Visit the ESPGHAN website About the AOECS Founded in 1988, the Association of European Coeliac Societies (AOECS) is an independent, non-profit organisation. It is the umbrella organisation of European national coeliac societies with currently 35 enrolled Member societies across Europe. AOECS represents people who are affected by coeliac disease or dermatitis herpetiformis (DH) and seeks to collaborate with international coeliac organisations worldwide. Visit the AOECS website

World Hepatitis Day 2018 

World Hepatitis Day takes place every year on 28 July.

World Hepatitis Day takes place every year on 28 July, with the aim of bringing the world together under one single theme in order to raise awareness of viral hepatitis and the impact it has worldwide. The theme for World Hepatitis Day 2018 is “Eliminate Hepatitis”.

Hepatitis B virus and hepatitis C virus are the leading cause of liver cancer in the world, yet more than 80% of those affected with viral hepatitis are unaware of their status. Viral hepatitis does not restrict itself to one specific region or people, but is found worldwide making it a global epidemic. There are many effective vaccines and treatments available for hepatitis B and C and eliminating viral hepatitis is highly achievable. According to the World Health Organisation’s Global Strategy of Viral Hepatitis, the goal is to do so by 2030. The question is, how? There are 325 million people that are living with viral hepatitis in the world, yet up to 290 million of these are unaware that they have it. In recognition of this, The World Hepatitis Alliance are launching a campaign in association with World Hepatitis Day, which aims to focus on ‘finding the missing millions’. The three-year awareness campaign aims to educate, influence national screening policies and encourage more people to get tested with the hope of finding the missing millions and reducing further spread of the virus. To accompany the campaign, a white paper is being written to provide stakeholders with information on how to reach the goal.  The World Hepatitis Alliance are urging people to get involved by spreading awareness and building momentum, driving action and to hold governments accountable. Alongside this, you can show your support by signing up to the campaign in order to help ‘find the missing millions’. Sign up to the ‘finding the missing millions’ campaign. About the World Hepatitis Alliance The World Hepatitis Alliance (WHA) is a patient-led and driven, non-governmental organisation. They have over 249-member patient groups in 84 different countries and work with governments and national members in order to raise awareness of viral hepatitis and influence global change. Visit the World Hepatitis Alliance Website.

UEG Digestive Health Month 

This May, UEG will celebrate their third annual Digestive Health Month campaign.

This May, UEG will celebrate their third annual Digestive Health Month campaign in order to raise awareness on a variety of chronic digestive diseases. 

There are three main events during the month, which include the launch of the MEP Digestive Health Group in the European Parliament on May 15, World IBD Day on May 19 as well as World Digestive Health day, which is coordinated by the World Gastroenterology Organisation, on May 29. The MEP Interest Group on Digestive Health will serve as a platform for exchange between the scientific community and policy makers to ensure that continually improving digestive health is an integral part of the EU agenda. On May 15, the group will launch at an event co-hosted by MEP Pavel Poc and MEP Nessa Childers at the European Parliament in Brussels. During the event, the current state of digestive health in Europe will be discussed and areas that require further work and urgent attention will be identified. A report on the current state of chronic digestive diseases across Europe will be produced to set out missions and priority areas for the group to tackle. On May 19, World IBD Day will take place to raise awareness of inflammatory bowel disease. UEG will work collaboratively with The European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) and the European Crohn’s and Colitis Organisation (ECCO) in order to help the public and healthcare professionals in understanding the impact of IBD and what can be done in order to treat and prevent the disease. Finally, World Digestive Health Day will take place on May 29. The theme changes each year and for 2018, the focus is on viral hepatitis B and C. Hepatitis B and C are the most common forms of the virus in Europe and in 2013 there were 19,101 cases of hepatitis B alone. To keep up with Digestive Health Month, follow us on Twitter on @my_ueg and track the discussion with the hashtag #DigestiveHealthMonth. To participate in the MEP Digestive Health Group launch event, follow updates from @my_UEG and track #MEP_DHG.  For more information on World Digestive Health Day, visit the World Gastroenterology Organisation website.

Mapping of Innovative Medicines for IBD Patients

EFFCA conduct research project to map innovative medicines for IBD patients.

The European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) have conducted a research project in order to map all innovative medicines and devices that are available for residents of all of its member countries. 31 countries (32 patient associations) from the EFCCA network participated in the project, which took place between October 2016 and December 2017. 

As with many other digestive health conditions, healthcare systems and treatments for IBD vary across different European countries, particularly when concerning new and innovative treatments and devices. The aim for the EFCCA’s IBD mapping project was to research these inequalities in further detail within their member countries and, as a result, find a way to reduce them as well as to use the information to present discrepancies to European policy makers to further stress the importance of equal access to treatment. The research found that the funding of healthcare in different countries varied between tax-funded coverage and privately funded coverage. Reimbursement policies for these varied a lot as well, where in some countries the patient pays nothing and in some, the patient must pay upfront and later claim their reimbursement. For patients with a low income, this may limit the availability of treatment and medication further. It was also clear from this research that the access to new innovative therapies is very unequal between countries and regions in Europe. Another striking finding was that the majority of the countries had no official register of IBD patients and details of the medications that they were receiving. Based on this research, the EFCCA have set the following recommendations to work on and develop together with other stakeholders:
  • The access of new innovative therapies needs to be accelerated
  • Further development of telemedicine and online service needs to be done in order to help access in rural areas and regions
  • The development of IBD patient registries on national and European levels needs to be encouraged
 The following countries took part in the research: Argentina, Austria, Belgium, Bulgaria, Croatia, Cyprus, Czech Republic, Denmark, Estonia, Finland, France, Germany, Greece, Hungary, Iceland, Ireland, Israel, Italy, Malta, New Zealand, Norway, Poland, Portugal, Romania, Serbia, Slovakia, Slovenia, Spain, Sweden, Switzerland, United Kingdom. View the Mapping of Innovative Medicines report
Who are EFCCA? The European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) is an umbrella organisation which represents 34 national IBD patient associations. They aim to improve the quality of life for anyone living with IBD and to provide them with a louder voice and visibility across Europe and beyond. Visit the EFCCA website

Word Digestive Health Day 2018

May 29th is World Digestive Health Day

Each year on 29 May, the World Gastroenterology Organisation (WGO) celebrates World Digestive Health Day. The awareness day is designed to focus on a new digestive disorder each year, with the aim to increase public awareness of its causes, prevention and therapy.

The theme and title for this year’s World Digestive Health Day is “Viral Hepatitis, B and C: Lifting the Global Burden”. Hepatitis is a viral infection which most commonly is spread and contracted through blood transmission, unprotected sex or perinatal transmission. There are five main types of hepatitis, including hepatitis A, B, C, D and E. If the virus develops into chronic hepatitis, this can lead to liver cirrhosis and liver cancer. Within Europe, hepatitis B and C are the most common forms of the virus and every year 96,000 people die from liver disease in relation to hepatitis B and C in EU and EEA countries[i]. The aim for World Digestive Health Day is to provide gastroenterologists, patients and the general public with information and an understanding of the latest research within the field. There are two main goals during this year’s World Digestive Health Day. The first is to provide the general public with simple messages in order to assist in the understanding of what the effects of hepatitis are and the second is to provide and develop information for healthcare professionals. To support these goals, a number of information pieces are released in multiple languages and distributed worldwide. These include infographics, brochures, podcasts as well as a WGO Handbook with tips, information and facts about hepatitis. UEG will be supporting the WGO and World Digestive Health Day on 29 May, 2018. World Digestive Health Day falls within UEG Digestive Health Month, which takes place throughout the entirety of May and can be followed via #DigestiveHealthMonth. View more information on World Digestive Health Day 2018 About the World Gastroenterology Organisation (WGO): With over 50,000 individual members worldwide, the World Gastroenterology Organisation is a federation with over 100 Member Societies and four Regional Associations. Visit the WGO website.
[i] https://www.ncbi.nlm.nih.gov/pmc/articles/PMC5356432

World Hepatitis Alliance launch their #StigmaStops campaign

World Hepatitis Alliance launch #StigmaStops

On Zero Discrimination Day (March 1, 2018), the World Hepatitis Alliance will be launching a year-long global awareness campaign, #StigmaStops. To coincide with the day, the World Hepatitis Alliance will draw attention to the stigma that is faced by people who are affected by hepatitis.

To raise awareness for the problems faced by those with hepatitis and support the day, the World Hepatitis Alliance have released a report entitled “Holding Governments Accountable: World Hepatitis Alliance Civil Society Survey Global Findings Report”. Within the report, it was found that in more than 90% of countries surveyed, stigma and discrimination was reported in relation to hepatitis. The report features some alarming statistics, including the fact that 42% of people have reported to have lost job opportunities or income as a result of the virus. Hepatitis is a viral infection that is most commonly contracted through unprotected sex, blood transmission, or perinatal transmission. Hepatitis B and C are the most common forms of hepatitis throughout Europe. In extreme case, the virus can lead to chronic hepatitis, liver cirrhosis and liver cancer. The World Hepatitis Alliance are asking for support for their #StigmaStops campaign. Stakeholders, members of the public and healthcare professionals are therefore encouraged to support the campaign in the following ways:
  • Write the hashtag #StigmaStops along with form of discrimination you have faced on the palm of your hand and post a picture or video on social media with the hashtag #StigmaStops
  • Share World Hepatitis Alliance #StigmaStops graphics on social media
  • Or, share your message anonymously by emailing your photo or video to contact@worldhepatitisalliance.org
Read the full World Hepatitis Alliance report About World Hepatitis Alliance The World Hepatitis Alliance is a global patient-led and patient-driven not-for-profit organisation representing the 325 million people living with viral hepatitis. The mission of the organisation is to harness the power of people living with viral hepatitis to achieve its elimination. In doing so, they work with governments, national members and other key partners to raise awareness, influence policy change and drive action to find the millions of people unaware of their condition. Visit the World Hepatitis Alliance website

EuropaColon's European Colorectal Cancer Awareness Month Campaign

EuropaColon: #Time4Change 

To coincide with European Colorectal Cancer Awareness Month in March, EuropaColon are launching a campaign named #Time4Change to encourage an increased awareness of colorectal cancer and the inequalities of care across Europe for the disease.

Colorectal cancer is the most common digestive cancer in Europe, with 68 cases per 100,000 of the population. It is the continent’s second biggest cancer killer, with one European dying from the disease every three minutes. Despite these alarming statistics, colorectal cancer is preventable and curable in many cases. There is strong evidence to demonstrate that screening for colorectal cancer reduces incidence and mortality rates and in the past decade, screening programmes have become more widespread across Europe. However, there are still vast inequalities across the continent which leads to varying participation rates in screening programmes and detection rates for the disease. Awareness and research for colorectal cancer has also progressed, but EuropaColon state that there is still much more that can be done and believe it is #Time4Change. To get involved, EuropaColon are encouraging members of the public, healthcare professionals, patients and policymakers to take three simple steps:
  • Print a downloadable poster from their website and add a simple statement about why you are supporting European Colorectal Cancer Awareness Month
  • Take a photo holding the sign (either individually or as a group)
  • Share your message and photo on social media using the hashtags #ECCAM18 and #Time4Change
Jola Gore-Booth, Founder and CEO of EuropaColon, states “EuropaColon is committed to preventing deaths and improving the quality of life for those affected by colorectal cancer. Collaborative working and patient advocacy is key to our work”. Find out more about European Colorectal Cancer Awareness Month
About EuropaColon EuropaColon is the voice of colorectal cancer patients in Europe and aims to save lives by bringing together all key stakeholders in the fight against this deadly disease, which is highly treatable if diagnosed early. EuropaColon works with Affiliates and Associates to prioritise and raise the profile of digestive cancers in Europe. The aim is to promote and encourage increased awareness of the symptoms and prevention of these cancers. Visit the EuropaColon website

Bowel Cancer UK Report: Finding the key to the cures

Bowel Cancer UK launch their new report; A plan to end bowel cancer by 2050

Bowel Cancer UK have launched a new report titled: 'Finding the key to the cures: A plan to end bowel cancer by 2050'. The report’s aim is to draw attention to the significant research gaps that exist around bowel cancer (also known as colorectal cancer or CRC).

CRC is the most common type of digestive cancer in Europe with 68 cases per 100,000 population. In 2012, 342,137 people were diagnosed with CRC throughout Europe, accounting for 14.3% of all cancers diagnoses across the continent. The report outlined that, within the UK, 332,000 lives will be lost to the disease between now and 2035. Despite how many lives will be lost, CRC is often very treatable if it is diagnosed early.  In publishing the report, Bowel Cancer UK are looking to accelerate the current state of CRC support and funding, highlighting the importance of early diagnosis and improved treatment to ensure that more people are able to survive the cancer. The charity states that strategic investment in high quality research is urgently required, as well as shared learning to help improve the collaborative efforts of a variety of organisations that all share the same goal of improving CRC survival. Bowel Cancer UK therefore call on healthcare professionals, patients and organisation to be catalysts for changes to enhance the lives of current and future CRC patients. Taking part in research, sharing awareness-raising stories and taking action in campaigns to facilitate early diagnosis and access to treatment are all methods outlined within the report that can help facilitate this change. Find out more information on colorectal cancer

Read the full Bowel Cancer UK report
About Bowel Cancer UK
Bowel Cancer UK is the UK’s leading CRC charity, determined to save lives and improve the quality of life for all those affected by CRC. The charity not only support and enable research through their campaigning, but also provide expert information, education services and fundraising. Visit Bowel Cancer UK's website 

The Unmet Needs of Patients Living with Metastatic Colorectal Cancer

EuropaColon is calling for responses for their new colorectal cancer survey

EuropaColon is looking for 1,000 patients across Europe to talk part in their new survey “The Unmet Needs of Patients Living with Metastatic Colorectal Cancer”.

By undertaking this survey, EuropaColon is aiming to make a difference to the lives of colorectal cancer patients. By collecting anonymous responses from patients across Europe, the information will be used as a basis for recommendations for change. Colorectal cancer (CRC) is the most common type of GI cancer in Europe with 68 CRC cases per 100,000 population. The disease has a much higher rate in men: 79 CRC case per 100,000 than women: 54 CRC cases per 100,000. CRC accounted for 342,137 diagnoses and 14.3% of all cancer diagnoses in Europe in 2012. Healthcare in Europe is different in every country. For example, patients may live in a country where your whole healthcare team supports them from diagnosis and they might have access to the latest treatments and medicines. No matter what a patient’s experience has been, EuropaColon is interested to hear what patients have to say. Participate in the EuropaColon survey
About EuropaColon
EuropaColon is the voice of colorectal cancer patients in Europe and aims to save lives by bringing together all key stakeholders in the fight against this deadly disease, which is highly treatable if diagnosed early. EuropaColon is working with Affiliates and Associates to prioritise and raise the profile of digestive cancers in Europe. The aim is to promote and encourage increased awareness of the symptoms and prevention of these cancers. Visit the EuropaColon website

Questions Answered: Pancreatic Cancer

Leading pancreatic cancer experts answer questions for World Pancreatic Cancer Day 2017.

This year, pancreatic cancer is expected to become the third leading cause of cancer related death in the EU. The outlook for the disease has not changed for the past forty years.

On World Pancreatic Cancer Day, Europe's leading pancreatic cancer experts answer key questions on pancreatic cancer and provide their insight into how we can turn the tide on the 'silent killer'.

Ali Stunt

Ali Stunt is the Founder and Chief Executive of Pancreatic Cancer Action and a member of Pancreatic Cancer Europe. Ali was diagnosed with pancreatic cancer in 2007 and, unlike 90% of patients diagnosed with pancreatic cancer, her illness was diagnosed early enough to allow a life-saving operation. Find out more about Ali's story.

Matthias Löhr

Matthias Löhr is a member of the UEG Public Affairs Committee and member of Pancreatic Cancer Europe. He is from the Department of Clinical Science, Intervention and Technology (CLINTEC), Karolinska Institutet in Stockholm, Sweden.

Sorin Barbu

Sorin Barbu is a member of the UEG Public Affairs Committee, President of the Romanian Pancreatic Club and Councillor in the European Federation of the International Society for Digestive Surgery (EFISDS). He is currently a professor of surgery at the “Iuliu Hatieganu” University of Medicine and Pharmacy in Cluj.

1. Why is the survival rate for pancreatic cancer so low?

Ali Stunt: Most pancreatic cancer patients (80%) are diagnosed too late, when their disease has progressed and surgery – currently the only potential for a cure – is not possible. Matthias Löhr: Survival rates are low due to late detection (and pancreatic cancer is often at a late stage at the point of diagnosis), no screening and poor chemotherapy response. Sorin Barbu: Late diagnosis – only 20% of patients can have a treatment with curative intent (radical surgery and chemotherapy) at the time of diagnosis. Due to the aggressiveness of the tumour, only 20% of patients treated with curative intent then survive for five years (median survival time for patients treated with curative intent is 18 to 24 months). Pancreatic cancer is known as the ‘silent killer’ and late diagnosis is often due to a lack of specific symptoms, as well as late occurrence of these symptoms.  There is also no efficient screening programme available for the disease.

 
2. Is the outlook for pancreatic cancer patients improving?

Ali Stunt: Sadly, the outlook for patients is very much the same as it was nearly 50 years ago. However, we are seeing very slight improvements in 5-year survival (1-2%) which is encouraging. Matthias Löhr: There is no current breakthrough on the horizon. However, our hope is, that through therapy with personalised cancer medicine, things will slowly begin to improve in the future.   Sorin Barbu: We have witnessed a slow improvement in recent years with an increase of survival in the short term (less postoperative deaths) and medium survival (from 18 to 24 months for curative intent treatment). However, we haven’t seen any improvements for 5-year survival.

3. What are the main risk factors for pancreatic cancer?

Ali Stunt: The main risk factors for pancreatic cancer are smoking (attributable to 30% of cases), obesity (12%), age, a family history of pancreatic cancer (5-10%) and diabetes. Matthias Löhr: There is often a lack of awareness and ignorance towards the disease from all parties involved, including physicians, grant agencies and policy makers. Smoking is also a huge risk factor for pancreatic cancer.   Sorin Barbu: Smoking, long last diabetes mellitus and obesity are factors that are predisposing and can be influenced by sporadic genetic mutations. Chronic pancreatitis and familial pancreatic cancer are other risk factors. Some known syndromes, with genetic mutations we can determine, can also lead to pancreatic cancer, but these unfortunately only represent around 10% of patients.

4. What are the main symptoms of pancreatic cancer?

Ali Stunt: The main symptoms are epigastric pain (discomfort below the ribs in the upper area of the abdomen), mid back pain, jaundice, resistant dyspepsia, unexplained weight loss, new-onset diabetes not associated with a metabolic condition and a change in bowel habits. Matthias Löhr: Back pain, weight loss and loss of appetite are key symptoms. To find out more about the symptoms of pancreatic cancer, I would advise looking at Pancreatic Cancer Europe’s 10 warning signs of pancreatic cancer. Sorin Barbu: Unfortunately, many symptoms of pancreatic cancer are non-specific to the disease. That’s why a diagnosis is often made after at least 2-3 medical visits which can frequently take over two months.

 
5. Someone in my family passed away from pancreatic cancer. Does that make me more at risk?

Ali Stunt: Your risk of developing pancreatic cancer increases to 50% above the normal population should you have two or more direct line relatives who have had pancreatic cancer. Just one relative affected doesn’t increase your risk, but it is worth mentioning to your GP any past family history of cancer. Matthias Löhr: If only ‘someone’ (one person) then no. If there are two or more in direct line, then there is an increased risk. Sorin Barbu: With one relative, you are not at a higher risk. However, you should avoid risk factors, such as smoking, and if you are undergoing abdominal imaging for any other diseases or symptoms, please ask the doctor to look carefully at your pancreas and ensure that they are aware of any family history of the disease.

6. Who should I approach when I’m worried about possible symptoms?

Ali Stunt: Approach your GP if you have symptoms that are not normal for you, if the symptoms are persisting and/or getting worse and ask about the possibility of pancreatic cancer. Keeping a diary of your symptoms for a 2-week period, noting the symptom severity and any changes is advisable unless you have severe pain or symptoms of jaundice (dark urine, yellowing of skin and whites of eyes and possibly itching), then you should seek help straight away. Matthias Löhr: It is best to speak with your GP as soon as you are worried about your symptoms. Sorin Barbu: The first approach should be your family physician.

7. Are there any new, exciting pieces of research that may help to improve survival rates?

Ali Stunt: There is lots of work being done on finding a diagnostic blood biomarker and one such is heading for clinical trials on a global scale. There is also work ongoing to identify the association between new-onset diabetes and pancreatic cancer. Matthias Löhr: Novel approaches for blood-based markers and personalised cancer medicine with next-generation sequencing of tumour tissue are where the most promising research is currently situated.

8. Following diagnosis, how is pancreatic cancer usually treated?

Ali Stunt: If in time for surgery, then a patient will have a Whipple’s procedure followed up by adjuvant chemotherapy and sometimes chemo-radiotherapy. Locally advanced disease may be treated with neo-adjuvant chemotherapy with a view to shrinking the tumour to become operable. Advanced disease is treated with chemotherapy and sometimes surgical procedures and/or radiotherapy to manage symptoms of the disease. Matthias Löhr: Surgery should be attempted in all cases suitable for resection. Downstaging chemotherapy may be used. After surgery, and in all other advanced/nonresectable cases, chemotherapy is the treatment of choice. Sorin Barbu: When pancreatic cancer is diagnosed at an operable stage, the first line is surgery, which is the only chance for a cure. This is followed by adjuvant chemotherapy. If the cancer is locally advanced (with no distant metastasis), neoadjuvant chemotherapy will be undertaken to downstage the tumour to an operable stage. If there is no response to neoadjuvant chemotherapy, only palliative treatment is possible.

9. What can be done on an EU level to improve the outlook for pancreatic cancer patients?

Ali Stunt: FUNDING, FUNDING, FUNDING! Matthias Löhr: Of upmost importance is more research, more awareness and a policy supporting the speedy diagnosis and treatment for these patients. Sorin Barbu: We need a targeted EU policy for pancreatic cancer diagnosis and treatment and, also included within this targeted policy, more funding for pancreatic cancer research. 

World Pancreatic Cancer Day 2017

Uniting the world in the fight against the world’s toughest cancer.

This year’s World Pancreatic Cancer Day occurs on November 16, a day that unites the world with the common goal of demanding better in the fight against the world’s toughest cancer. Pancreatic cancer is an especially underfunded and underreported disease, receiving less than 2% of overall cancer research funding across Europe. Despite this, this year it will become the third leading cause of cancer related death in the EU. Currently, there is no screening test or early detection method for pancreatic cancer and, even more alarmingly, 64% of Europeans state that they know very little about the disease, making the chances of early diagnosis extremely slim. Organised by the World Pancreatic Cancer Coalition, World Pancreatic Cancer Day started in 2014 as a way to collectively work to raise awareness of the disease. The awareness day quickly became a global success that continued to grow in outreach, visibility, and engagement every year. It is easy to get involved in World Pancreatic Cancer Day by spreading the word on social media to help educate your family and friends about the disease. You are invited to temporarily change your Facebook and Instagram profile picture to support World Pancreatic Cancer Day and post using the hashtags #WPCD or #worldpancreaticcancerday. Further to this, you can choose to wear purple all day - the colour associated with pancreatic cancer. Visit the World Pancreatic Cancer Day Website View UEG’s infographic on pancreatic cancer in Europe View UEG’s activity for World Pancreatic Cancer Day - #Voice4PanCan
About World Pancreatic Cancer Coalition
The World Pancreatic Cancer Coalition is a group of pancreatic cancer patient advocacy groups from around the world, working together to raise global pancreatic cancer awareness and work collaboratively to support each other’s efforts. Now comprising of 60 organizations from over 27 countries across the world, the group collectively hold World Pancreatic Cancer Day every year. Along with the awareness day they individually work towards gaining awareness and research into pancreatic cancer. Visit the World Pancreatic Cancer Coalition website

#Voice4PanCan

It's time to give pancreatic cancer a voice. 

This year, pancreatic cancer will become the third leading cause of cancer related death in the EU, with mortality rates set to surpass breast cancer. Where survival rates for the majority of cancers have improved over the past 40 years, the outlook for pancreatic cancer hasn’t changed. 

It’s time to give Pancreatic Cancer a voice. Despite appalling patient outcomes, pancreatic cancer receives less than 2% of overall cancer research funding across Europe. UEG are calling on the EU and its Member States to fund more research into pancreatic cancer. With increased research, we can identify the tools for early patient diagnosis and help save lives.  Show your support for #Voice4PanCan by following one or more of the steps below: 1. Tweet or post #Voice4PanCan on social media, along with a short message on why you are supporting more research funding for pancreatic cancer.  Download and print our banner to write your own message! 2. Share our message on World Pancreatic Cancer Day by supporting our Thunderclap campaign.  Support on Thunderclap! 3. Email us directly by following instructions on our #Voice4PanCan Patient Affairs webpage.  Email us directly!

World Hepatitis Day – Global Summary Report

Explore the aims, outcomes and learnings from this year’s World Hepatitis Day. 

World Hepatitis Day was held on 28 July, 2017 and was a day that brought the world together with the common aim of eliminating viral hepatitis. Being one of only four disease-specific global awareness days officially endorsed by the World Health Organisation, World Hepatitis Day united patient organisations, governments, medical professionals and the general public to boost the global profile of viral hepatitis.

Demanding action in disease prevention and access to testing, treatment and care was a key focus for this year’s campaign. Thanks to the effort of 162 countries and 106 national governments, World Hepatitis Day 2017 was a huge success. There were over 1,200 events across the globe, including screening and vaccination drives, public seminars, press briefings, marches and health fairs, as well as creative events such as awareness-raising pop songs and the illumination of well-known landmarks. The day was successful in garnering the attention and support of heads of state, ministers, celebrities, private corporations, civil society organisations, the media and the general public. The support resulted in more than 29,282 people being vaccinated, as well as more than 48,985 people being vaccinated for viral hepatitis. Following the success of World Hepatitis Day, the World Hepatitis Alliance have released a report to showcase the many activities around the world and how supporters’ work has helped transform the lives of millions living with the illness. View the World Hepatitis Day Global Summary Report

About World Hepatitis Alliance

The World Hepatitis Alliance (WHA) is a patient-led and patient driven non-governmental organisation (NGO). With over 249 member patient groups from 84 countries, WHA works with governments, national members and other key partners to raise awareness of viral hepatitis and influence global change. To achieve a world free from viral hepatitis, they provide global leadership in advocacy, awareness-raising and the fight to end its social injustice. Visit the World Hepatitis Alliance website

Colorectal Cancer Across Europe

Find out more about colorectal cancer screening across Europe.

Colorectal cancer (CRC) is the most common type of GI cancer in Europe with 68 CRC cases per 100,000 population. CRC accounted for 342,137 diagnoses and 14.3% of all cancer diagnoses in Europe in 2012. The disease has a higher rate in men (79 cases per 100,000) than women (54 CRC cases per 100,000).

There is strong evidence to demonstrate that screening for CRC reduces incidence and mortality rates, yet there are vast inequalities in CRC screening throughout the continent. To highlight the current state of CRC screening in Europe, UEG have developed a leaflet titled ‘Colorectal Screening Across Europe’.

The leaflet includes strong evidence that demonstrates how screening reduces CRC incidence and mortality rates, the latest CRC incidence rates by European country and the various screening methods currently employed across Europe.

The leaflet is being launched at the European Digestive Cancer Days (EDCD) conference in Prague. The EDCD conference aims to cover not only the discussion of state-of-art scientific issues, but also policy makers’ and patients’ viewpoints to facilitate the implementation of high-priority cancer control activities. For highlights from the EDCD conference, view @my_UEG on Twitter or visit #EDCD17.

View the Colorectal Cancer Screening Across Europe leaflet

View more information on the EDCD conference

NOhep on World Hepatitis Day 2017

Find out about this year’s NOhep activity on World Hepatitis Day.

Friday, 28 July was World Hepatitis Day 2017, a day dedicated to bringing the world together under a single theme to raise awareness of the global burden of viral hepatitis and to influence real change. The theme of World Hepatitis Day 2017 was ‘ELIMINATE HEPATITIS’.

Hepatitis is one of the leading causes of death around the world, accounting for 1.34 million deaths a year. Together hepatitis B virus and hepatitis C cause 80% of liver cancer cases in the world and, currently, 90% of people living with hepatitis B and 80% living with hepatitis C are not aware of their status. World Hepatitis Day therefore provides the perfect opportunity for patients, policymakers, healthcare professionals and the public to come together and raise awareness. The awareness day also saw NOhep celebrating their one-year anniversary. Launched by the World Hepatitis Alliance (WHA) on World Hepatitis Day 2016, NOhep is an independent initiative aiming to eliminate viral hepatitis by 2030. In celebration of their anniversary, NOhep released the ‘We Are NOhep’ documentary, showcasing the many different actions people are taking across the world to eliminate viral hepatitis. View the ‘We Are NOhep’ documentary. About NOhep NOhep is a global movement uniting those working in the field of hepatitis from across the world with the goal to eliminate viral hepatitis by 2030. They aim to reach over 300 million people by 2030 to accelerate action towards the elimination of viral hepatitis. Visit the NOhep website Visit the World Hepatitis Alliance website

Alcohol and Digestive Cancers

UEG Alcohol and Digestive Cancers: Time for Change.

The European region has the highest levels of alcohol consumption in the world, with one fifth of the population aged 15 and above drinking heavily at least once a week. As a result, the continent also has the highest proportion of total ill health and premature death directly linked to alcohol.

Alcohol consumption is a known risk factor for digestive cancers, including oesophageal, liver, pancreatic, colorectal and gastric cancer. ‘Alcohol and Digestive Cancers: Time for Change’ highlights the alarming scale of alcohol consumption across Europe along with its direct and indirect impact on digestive cancers. This report brings opinions from leading European digestive cancer specialists, stakeholder organisations and patient groups, along with an endorsement from the Estonian Presidency of the Council of the EU. The report categorised three levels of alcohol consumption, being ‘light’, ‘moderate’ and ‘heavy’ and the health impacts associated: 
  • Light drinkers, who have up to 1 drink per day, have an increased risk of oesophageal cancer
  • Moderate drinkers, who have between 1 and 4 drinks a day, increase their risk of colorectal cancer by 52%
  • Heavy drinkers, who have more than 4 drinks per day, are at an increased risk of pancreatic, gastric and liver cancer
The five digestive cancers mentioned contribute to a third of all cancer deaths worldwide. EU citizens drink an average of 2 drinks per day, with the highest consumption levels in eastern Europe (Lithuania, Czech Republic, Romania, Bulgaria and Croatia) and lowest levels in Malta, Italy, Greece, the Netherlands and Sweden. However, all EU Member States were found to have ‘moderate’ consumption levels, on average. Read the report To support the report and raise awareness of the link between alcohol and digestive cancers, UEG have produced an animated video. The animation informs viewers of the scale of alcohol consumption in Europe, the direct and indirect effects of alcohol consumption and the need for immediate action to address this endemic issue. Watch 'Alcohol and Digestive Cancers: Time for Change'

World Hepatitis Day 2017

'Eliminate hepatitis' is the theme of World Hepatitis Day 2017.

World Hepatitis Day (WHD) takes place every year on 28 July and brings the world together under a single theme to raise awareness of the global burden of viral hepatitis and to influence real change. The theme for world hepatitis day 2017 is ‘Eliminate hepatitis’.

Together, hepatitis B virus and hepatitis C cause 80% of liver cancer cases in the world. Viral hepatitis is not found in one location nor amongst one set of people; it is a global epidemic that can affect millions of people without them even being aware. Currently, 90% of people living with hepatitis B and 80% living with hepatitis C are not aware of their status. This can result in the real possibility of developing fatal liver disease at some point in their lives and in some cases, unknowingly transmitting the infection to others. With the availability of effective vaccines and treatments for hepatitis B and a cure for hepatitis C, the elimination of viral hepatitis is achievable, but greater awareness and understanding of the disease and the risks is a must, as is access to cheaper diagnostics and treatment. World Hepatitis Day presents an opportunity to raise the profile of viral hepatitis among the public, the world’s media and on the global health agenda. Visit the World Hepatitis Day official website About World Hepatitis Alliance The World Hepatitis Alliance (WHA) is a patient-led and patient driven non-governmental organisation (NGO). With over 249 member patient groups from 84 countries, WHA works with governments, national members and other key partners to raise awareness of viral hepatitis and influence global change. To achieve a world free from viral hepatitis, they provide global leadership in advocacy, awareness-raising and the fight to end its social injustice. Visit the World Hepatitis Alliance website

CRC Screening Booklet

EuropaColon's CRC Screening and Prevention Booklet is being translated into 21 languages. 

EuropaColon has produced a 28-page booklet, titled ‘Colorectal Cancer Prevention and Screening: What YOU Need to Know’, which is being translated into 21 languages. The booklet provides tips to help prevent colorectal cancer (CRC), screening methods for CRC and treatment approaches if diagnosed.

CRC is the second most common cancer in Europe and is often curable if caught early. The booklet provides an array of advice on steps that can be taken to help prevent CRC. One of the most important steps in screening, and the booklet describes the various types of screening available (with different types of screening recommended in different European countries).

So far, the booklet has been translated into ten languages (German, Finnish, Hungarian, Italian, Polish, Russian, Serbian, Slovenian, Spanish and English). Booklets in further languages will be provided soon.

View EuropaColon’s CRC screening booklet

About EuropaColon

EuropaColon is the voice of colorectal cancer patients in Europe. Its aim is to save lives by bringing together all key stakeholders in the fight against this deadly disease which is highly treatable if diagnosed early.

EuropaColon is actively working with its Affiliates and Associates to prioritise and raise the profile of colorectal cancer and to promote and encourage increased awareness of the symptoms and prevention of the disease. The organisation are campaigning for formal population screening programmes and conformity to EU guidance and policies throughout Europe.

Visit the EuropaColon website.

UEG Press Release: IBD

Paediatric IBD patients are not meeting recommended calcium and vitamin D intake.

(Vienna, 15 May, 2017) A new study highlights that children suffering from inflammatory bowel disease (IBD) are not meeting the daily recommended intake of calcium and vitamin D. The research, conducted at Great Ormond Street Hospital for Children in London, identified that only 26.6% and 21.3% of paediatric IBD patients were achieving the current recommended intake for calcium and vitamin D respectively.

Medical experts from United European Gastroenterology (UEG) are therefore calling for immediate intervention to ensure that paediatric IBD patients are not put at risk of experiencing poor bone health and development, calcium homeostasis imbalance and vitamin D deficiencies. Achieving optimal levels of calcium and vitamin D is essential for developing children, especially in patients with IBD, as research suggests that children and adolescents with the disease develop suboptimal bone health in comparison to their peers. Therefore, they may not achieve optimal bone mineralisation, resulting in an increased risk of permanent height deficits. Vitamin D and calcium both play a major role in bone health and recently vitamin D has shown to potentiate the effect of anti-inflammatory treatments. However, ensuring a sufficient intake of vitamin D and calcium in children can be challenging. Rita Shergill-Bonner, Principle Dietician at Great Ormond Street Hospital for Children, London, explains, “When taking into account their young age and modern eating habits, coupled with the emotional, psychological and physical stress of living with IBD, it can be hard for paediatric patients to maintain a balanced diet and a sufficient intake of the right nutrients. We therefore urge the parents and carers of paediatric IBD patients to monitor their children’s diets carefully to ensure they are consuming the right foods to help their disease course and ensure adequate and normal development.” There is no solitary cause of IBD but it is thought to be due to a combination of genetic and environmental factors. Incidence rates have been steadily increasing over the past few decades and one in four cases of the disease are diagnosed during childhood. Physical IBD symptoms can be extremely debilitating, including severe abdominal pain, diarrhoea, weight loss and fatigue. The disease can also have a significant impact on a patient’s psychological, emotional and mental health, with over half of sufferers feeling that the disease negatively affects their education. Professor Philippe van Hootegem, UEG IBD expert comments, “There are many effective drugs available to help treat IBD but there are still a lot of unmet needs in both child and adult patients. Interesting and hopeful new drugs, some of which are to be taken orally, are in their final development stage. Nevertheless, a definitive curative therapy is not on the horizon yet and future research is still needed.” “It is imperative that healthcare professionals provide all IBD patients with regular and frequent advice on nutrition and healthy eating habits, including guidance on food sources that are rich in calcium and vitamin D”, adds Professor Gigi Veereman, UEG paediatric IBD expert. “Tailored care services, long-term follow up, regular reviews and frequent medical interventions are required to minimise additional health risk in our paediatric patients” May 29 is World Digestive Health Day and this year health organisations from around the world are coming together to highlight the issues affecting patients living with IBD.

ENDS View press release on the UEG press page References 
  1. Shergill-Bonner R., et al. Paediatric IBD patients do not meet the daily recommendations of vitamin D and calcium intake: survey based analysis in a tertiary centre. Presented at the 12th Congress of ECCO, Barcelona, February 15-18, 2017. Available here: https://www.ecco-ibd.eu/index.php/publications/congress-abstract-s/abstracts-2017/item/p707-paediatric-ibd-patients-do-not-meet-the-daily-recommendations-of-vitamin-d-and-calcium-intake-survey-based-analysis-in-a-tertiary-centre-2.html
  2. B. Wilson, S. Lönnfors, S. Vermeire. The true impact of IBD: a European Crohn’s and Ulcerative Colitis patient life. IMPACT Survey 2010-2011. Available here: http://www.efcca.org/sites/default/files/IMPACT-STUDIE_online.pdf

About The IBD Journey 

Watch the IBD Journey, produced in support of World Digestive Health Day 2017

Every 29 May, the World Gastroenterology Organisation (WGO) celebrates World Digestive Health Day, focusing upon a particular digestive disorder in order to increase general public awareness of prevention and therapy.

For World Digestive Health Day in 2017, the theme will focus on inflammatory bowel disease (IBD). The two main disease categories in IBD are Crohn's Disease (CD) and ulcerative colitis (UC), which have both overlapping and distinct clinical and pathological features. Life with inflammatory bowel disease (IBD) can be extremely challenging. This chronic disease often begins early with symptoms, including severe abdominal pain, diarrhoea, fatigue and weight loss, having a major impact on daily life. To raise awareness of this chronic disease and to support the theme of World Digestive Health Day 2017, UEG, in collaboration with other digestive health organisations, have produced an animated video titled the IBD Journey.

United European Gastroenterology highlight the need for multi-disciplinary care in treating IBD, from a range of healthcare providers and carers, including doctors, nurses, psychologists and nutritionists.

This video was produced in partnership with The European Crohn’s and Colitis Organisation (ECCO) for World Digestive Health Day 2017. Support was also received from The European Federation of Crohn’s and Colitis Organisations (EFFCA), The European Society of Paediatric Gastroenterology, Hepatology and Nutrition (ESPGHAN), The European Society of Neurogastroenterology and Motility (ESNM) and The World Gastroenterology Organisation (WGO). View the IBD Journey animation View information, statistics and resources on IBD About the World Gastroenterology Organisation (WGO) The World Gastroenterology Organisation (WGO) is a federation of over 100 Member Societies and four Regional Associations of gastroenterology representing over 50,000 individual members worldwide. Find out more: http://www.worldgastroenterology.org/ 

#ShowYourFace for Hepatitis

NOhep have launched a new campaign ahead of World hepatitis Day 2017 on July 28, 2017.

On World Hepatitis Day 2017, NOhep are aiming to accelerate progress towards achieving the goal of hepatitis elimination by 2030.

Eliminating hepatitis is a simple call to action that everyone can get behind. Regardless of your priorities, the theme can be easily adapted for local use; to achieve elimination, greater awareness, increased diagnosis and key interventions including universal vaccination, blood and injection safety, harm reduction and treatment are all needed. Every activity that addresses viral hepatitis is a step towards eliminating it. To highlight this, NOhep are putting a human face to elimination of viral hepatitis. To encourage people to feel empowered, personally connected and understand their role in elimination, NOhep are bringing the ‘Eliminate Hepatitis’ theme to life through the #ShowYourFace campaign. Here, users are invited to share a photo accompanied by their personal message on the fight to eliminate hepatitis. There are two ways in which people can support this; through a bespoke #ShowYourFace selfie tool or directly through the usual social channels. Find out more about the campaign and the #ShowYourFace selfie tool
What Is World Hepatitis Day?
World Hepatitis Day (WHD) takes places every year on 28 July and brings the world together under a single theme to raise awareness of the global burden of viral hepatitis and to influence real change. One of just four disease-specific global awareness days officially endorsed by the World Health Organisation (WHO), WHD unites patient organisations, governments, medical professionals, civil society, industry and the general public to boost the global profile of viral hepatitis.
About NOhep
Launched by the World Hepatitis Alliance (WHA) on World Hepatitis Day 2016, NOhep is an independent initiative aiming to eliminate viral hepatitis by 2030 led by the WHA and a working group comprised of civil society and multilateral organisations. 
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