The highly anticipated ECCO-EFCCA Patient Guidelines have been presented at a Press conference on March 16, 2016 at the RAI Amsterdam Congress Center, preceeding the 11th ECCO Congress.
In December 2014 the European Crohn’s and Colitis Organisation (ECCO) organised a meeting with IBD Patient Association Representatives and ECCO National Representatives (both nurses and physicians) with the aim to improve patient care and the quality of life for patients with inflammatory bowel disease (IBD). Patients, physicians and nurses were assembled in focus groups and reviewed topics which are of high relevance to patients. The overall outcome of this meeting was that there was an imminent need for patient guidelines. These patient guidelines will help patients to understand the latest clinical research and to provide them with valuable information on their disease.
Following the meeting in December 2014, ECCO joined forces with the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) in order to develop the ECCO-EFCCA Patient Guidelines. Two taskforces, one focusing on Crohn’s Disease and the other one on Ulcerative Colitis, were formed. Taskforces consist of patients, physicians and nurses from different European countries. The working groups are responsible for selecting statements from the existing ECCO Clinical Guidelines which are most relevant to patients and for translating these statements into patient language.
Watch an INTERVIEW (click here) with one of the Chair of the Patient Working Group, Martin Kojinkov, EFCCA Board member,
For more information please contact the EFCCA office.
Worldwide, five million people live with Crohn’s disease and ulcerative colitis, conditions known as inflammatory bowel diseases (IBD). In most cases the illness can be kept under control with medication, but despite extensive research there is currently no known cause or cure for IBD and little public understanding of the pain and chronic suffering with which IBD patients courageously cope every day of their lives.
World IBD Day is marked on 19 May each year and is led by patient organisation representing 38 countries on four continents from Argentina, Australia, Brazil, Canada, 28 European nations through the umbrella organisation EFCCA, Israel, Japan, New Zealand to the United States of America. Each year more IBD patient organisations and related NGOs are joining world wide efforts to raise awareness about IBD.
In 2016, the European Crohn´s and Ulcerative Colitis (EFCCA) together with it´s 31 member associations, and other IBD sister organisations from around the world are uniting their efforts around the campaign “Improving quality of life for people with IBD” in order to create greater awareness about inflammatory bowel disease and its impact on the quality of life for people with IBD.
As part of the campaign we are aiming to illuminate famous landmarks (in purple (the colour for World IBD Day) on 19 May 2016. Images of these highlighted landmarks/buildings will be shared on international and national social media channels aimed to create greater awareness around inflammatory bowel disease as well as on the World IBD Day website. (www.worldibdday.org). Additionally, associations around the world are invited to organise supporting events providing detailed information about IBD and issues addressing the quality of life for people with IBD.
BAB - Biologics & Biosimilars Survey
In line with EFCCA´s work programme on patient safety we launched a survey entitled BAB – Biologics and Biosimilars to assess patients knowledge about biosimilars and to find out to what extent patients are aware of the issues involved around biosimilars medicines. The scientific coordinator of the BAB survey is Professor Laurent Peyrin- Biroulet - from the Department of Hepato-Gastroenterology CHU in Nancy, France.
The online survey consisted of 14 questions and was translated into nine languages (English, French, Italian, German, Spanish, Russian, Greek, Turkish, Hebrew). The survey was available between November 2014 and October 2015 on the website of EFCCA and member patient associations of EFCCA were sharing informing about the survey to their members.
In total we collected 1181 responses which were mostly from Europe and included 55.6% of people with Crohn’s disease, 34.1% with ulcerative colitis, 6.4% with rheumatic diseases and 3.9% with other diseases.
Follow this link to see a presentation of the first results of the BAB survey as presented during the Patient Advocacy Workshop that took place in Barcelona on 4-6 February 2016.
This questionnaire has been designed in collaboration with Prof. Laurent Peyrin-Biroulet and his team - dept of Hepato-Gastroenterology CHU in Nancy.
Translations, technical tools and dissemination material are under unrestricted grant from Abbvie.
As part of the World IBD Day celebrations EFCC organised participation at the Brussels 20 km marathon in order to raise awareness about Crohn´s Disease and Ulcerative Colitis, collectively known as inflammatory bowel disease (IBD), which affect over 3 million people in Europe.
The 20 km marathon took place on 31 May at 10 am in Brussels, Belgium. Starting point was at the Parc du Cinquantenaire.
We had over 40 runners registered from 13 European countries including a mix of professional and amateur runners made up by patients, doctors, friends and family members.
EFCCA also had an information booth at the starting point of the race. The booth was run by a team of volunteers and supporters wearing the purple t-shirts of the EFCCA team and colour of World IBD Day and distributed purple ribbons and materials to inform people about IBD and about EFCCA activities.
EFCCA would like to thank the 20Km Brussels marathon staff for their support and assistance.
Joining forces to fight IBD in the Middle East
On 28-29 November a group of people living with IBD and IBD healthcare specialists from 6 countries in the Middle East including Oman, Saudi Arabia, Dubai, Qatar and Kuwait met for the first time in Dubai to exchange ideas and experiences on how to improve the quality of life of people with IBD in the Middle East.
The European Federation of Crohn's & Ulcerative Colitis Associations (EFCCA) with the support of the pharmaceutical company Janssen, organised a two day training workshop for patients and relevant stakeholders with the aim of supporting the establishment of patient support groups in the region.
The methodology of the training workshop applied a bottom up approach, allowing all participants to brainstorm on the actual needs of patients in the countries represented. During the discussions it emerged that - even though in several of the countries the quality and access of healthcare services was very high - people with IBD still felt very much isolated from the rest of society and there was little support and awareness about the disease. Participants identified a strong need for additional support both for people with IBD and also their carers/family members in terms of psychological support, fighting the stigma of IBD, accurate information available in Arabic about IBD, and other issues that affect the quality of life of these people.
The training workshop is a pilot project which EFCCA has developed in order to offer support to people living with IBD and their family members/carers in countries where there are no formal patient association representations.
The first feedback from the pilot workshop has been very positive in that it really encouraged an active participation of all delegates, including IBD patients, IBD nurses and IBD physicians showing their willingness to collaborate together in order to create a more holistic support for people living with IBD.
From EFCCA´s long experience of working with patient associations, EFCCA is aware that the process of setting up a real support service for patients run by patients requires a considerable amount of time and a lot of effort and motivation from the people involved. But we are happy to have grown the first seeds amongst our colleagues in the Middle East during the pilot workshop and we will be available for further assistance as the seeds are starting to grow.
Some photos taken during the workshop with participants explaining main discussion notes: