Luke Paskins


T  +44 (0) 1444 811099


E  patientaffairs@ueg.eu

 

 

 

World Stomach Day

Tuesday, 2 October 2018 marks the first ever World Stomach Day.

Tuesday, 2 October 2018 marks the first ever World Stomach Day, an international initiative to raise awareness and support for one of our most important organs.

Ahead of the day, we investigate what makes the stomach so vital to our wellbeing, as well as what challenges it is currently facing. The stomach is a highly sophisticated organ with a unique physiology, biochemistry, immunology and microbiology. It is an integrated part of the digestive system and acts as a reservoir for food, protects the body against foreign elements entering the blood stream and protects against microbial colonisation. Although the stomach holds such a central role in the digestive tract, it does also present a range of challenges. Peptic ulcer disease, gastroenteritis, functional dyspepsia and gastric (stomach) cancer are all diseases which may occur in the stomach. Furthermore, the physiology of our stomach is often disrupted by Helicobacter pylori (H. pylori) infection, which is the world’s most common chronic bacterial infection. H. pylori infection has been classified as a carcinogen by the International Agency for Research on Cancer as it is the most significant factor leading to the development of gastric cancer. Gastric cancer mainly affects older generations and claims the lives of almost 60,000 EU citizens every year. It is estimated that 50% of the world’s population is infected with H. Pylori, however most often it has none or very minor effects on those infected. Most people don’t know they are infected until symptoms of gastric irritation occurs. H. pylori infection can be treated with antibiotics, and a study presented during UEG Week 2017 showed a 22% reduction in the risk of developing gastric cancer in people over 60 compared with the general population if H. pylori eradication had occurred. World Stomach Day marks the thirteenth anniversary of Barry Marshall and Robin Warren’s Nobel Prize in Physiology or Medicine award in 2005. They were rewarded for their discovery which identified that inflammation of the stomach (gastritis) and ulceration of the stomach (peptic ulcer disease) is the result of H. pylori infection. Their discovery has largely impacted how gastric diseases are managed today. The aim for World Stomach Day is to increase knowledge and support for the stomach, as well as spread awareness surrounding the challenges it faces. Gastric cancer is one of the most aggressive forms of digestive cancer and more research and funding is needed in order to better understand, prevent and treat the disease. You can get involved by spreading awareness and joining in with the discussion under the hashtag #WorldStomachDay.

HSI and World Stomach Day World Stomach Day is organised by the Healthy Stomach Initiative (HSI). HSI has been created by dedicated stomach experts and aim to support the early detection of gastric cancer and raise awareness of stomach-related conditions.  Visit the HSI website

World Obesity Day

Thursday, October 11 marks World Obesity Day. 

Thursday, October 11 marks World Obesity Day. Organised by the World Obesity Federation, this year’s focus is to raise awareness surrounding the severity and diversity of weight stigma.

If no changes are made, 2.7 billion adults and over 80 million children under five will suffer from obesity by 2025 worldwide[1]. Obesity is responsible for a significant proportion of non-communicable diseases, including heart disease, diabetes and stroke. It is also related to a number of digestive health issues, such as non-alcoholic fatty liver disease and digestive cancers. Studies have, for example, shown that obesity can increase the risk of colorectal cancer by nearly three times in both men and women. The WHO European region has a higher prevalence of children that are overweight than any other WHO region in the world [2] and an alarming one in three children between 6-9 years is either overweight or obese in 46 European countries[3]. One of the main aims with this year’s theme is to help people overcome the barriers that arise as a result from stigma which may be preventing them from getting much needed medical treatment. In alignment with the theme, the World Obesity Federation is calling on media outlets to portray obesity in a fair, accurate and informative way by cutting out the use of stigmatising imagery and language. Alongside the media, the World Obesity Federation are calling on the Government and HCP’s to improve and acknowledge our living environments and how these are contributing to obesity, rather than solely focusing on individual responsibility and blame. This includes implementing new policies to address obesogenic food environments and improving urban environments to make them more walkable which will help contribute to higher activity in people’s daily lives. Join the discussion on Twitter by following @my_UEG and using the hashtag #WorldObesityDay Visit the World Obesity Day Website Visit the World Obesity Federation Website Watch our video on childhood obesity View our infographic on diet and GI diseases About World Obesity Federation The World Obesity Federation represents professional members of the scientific, medical and research communities from over 50 regional and national obesity associations. Through this community, World Obesity Federation creates a global community of organisation with aims to solve the problems of obesity.
[1] https://www.obesityday.worldobesity.org/
[2] http://www.who.int/gho/publications/world_health_statistics/EN_WHS2015_Part2.pdf?ua=1
[3] http://www.euro.who.int/en/health-topics/disease-prevention/nutrition/policy

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.

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

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

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

Nutrition, Obesity and Digestive Diseases

Useful information, statistics and resources for patient organisations.

Pancreatic Cancer

Useful information, statistics and resources for patient organisations.

Colorectal Cancer

Useful information, statistics and resources for patient organisations.

Inflammatory Bowel Disease

Useful information, statistics and resources for patient organisations.

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Hepatitis

Useful information, statistics and resources for patient organisations.

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UEG's Patient Affairs Policy 

UEG's work with patient organisations is guided by its Patient Affairs Policy.

UEG's Vision

UEG's Aims

  • To establish active partnerships with pan-European patient organisations, carrying out joint activities in the field of digestive health
  • To consult, listen to and learn from pan-European patient organisations and to support them wherever resources allow
  • To act as a central hub of European digestive health information and disseminate knowledge about the latest advances in digestive disease, research, prevention and management
  • To work in conjunction with patient organisations to help raise public awareness of gastrointestinal diseases and related screening programmes
  • To promote links to related patient organisations operating in and throughout Europe
  • To share best practice and encourage joint working initiatives with and between patient organisations
  • To work with national and specialist medical societies to increase patient organisation involvement in digestive health initiatives and activities on a pan European and national basis

 UEG's Tasks 

  1. To supervise, review and work with professional public relations and EU affairs agencies engaged by UEG to help meet our aims and vision with regards to patient relations
  2. To develop and co-ordinate a register of patient organisations operating in Europe, together with their key contacts
  3. To pro-actively build links with relevant pan-European patient organisations
  4. To work with patient organisations on events, activities and initiatives to help raise the profile of digestive health within public and political arenas
  5. To promote patient organisation activity and improve their links with UEG
  6. To share information, online links and best practice via UEG communications channels
  7. To pro-actively seek to involve patient organisations in awareness raising activity during UEG Week

Partnership Working

UEG is dedicated to working with patient organisations and key stakeholders in the interests of raising awareness of GI issues and bettering patient outcomes. The UEG Patient Affairs team are actively engaging with a range of patient organisations to share best practice, increase awareness of UEG activities, promote greater awareness of gastroenterology diseases and to discuss potential collaborative opportunities. If your organisation would like to work with UEG in any of the ways listed below, please contact the UEG Patient Affairs team using the details listed in the contact section.

Social Media

UEG are active on social media, promoting campaigns and engaging with patient organisations via the UEG Twitter account @my_UEG. UEG share patient organisation news and resources, support awareness days and take part in and host Twitter chats. Some of the patient organisations that UEG has collaborated with include: EuropaColon, the World Hepatitis Alliance, ELPA, EFFCA, PCE and WGO.