This is the Executive Summary of the Patient Advocacy Workshop on Patient Safety which took place in Barcelona from 4-6 February 2016 and gathered over 60 patient representatives from a wide range of immune modulate disease groups.A full report will be made available shortly.
Download Executive Summary
Join the EFCCA purple team to run the 20 km Brussels race in order to raise awareness about IBD on the occasion of World IBD Day (official date 19 May).
As in previous years we are organising an EFCCA purple team made up of people with IBD, physicians, family members and other supporters to run the 20 km Brussels race on 29 May 2016 in Brussels 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.
This activity forms part of our wider efforts around World IBD Day to raise awareness and support the IBD community worldwide. For more information please visit: www.worldibdday.org
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.
The next Annual General Meeting of EFCCA will take place from 27-28 May 2016 in Brussels. The AGM will start in the afternoon so that delegates can arrive in the morning of the 27 May.
The Gala dinner will take place the same day (ie 27 May) and the AGM continues the next day until 4 pm. EFCCA will cover the costs for 1 delegate per person (according to our financial rules).
Please note that on Sunday, 29 May 2016, there will be the 20 km Brussels marathon and AGM delegates are invited to join the EFCCA purple team at the marathon (as supporters or participants) in order to raise awareness for World IBD Day. EFCCA will in addition to one delegate also cover the costs of one runner per member association, who will also be invited to the AGM. We believe this is an excellent way to involve more people from your association in the network of EFCCA.
More details will be send to you in the coming weeks.
On 6 October 2015 the European Commission´s Directorate General for Internal Market, Industry, Entrepreneurship and SMEs (DG GROW), organized a workshop on Access to and Uptake of Biosimilar Medicinal Products.
The objective of the workshop were to gather all relevant interested parties in order to facilitate a multi-stakeholder exchange of information, experiences and reflection on the state of play and explanations for differences in market uptake amongst the EU Member. In particular, to give a floor for patients, doctors and payers to express their views on biosimilar related developments at European but also at national level and to stimulate an open discussion and explore needs for action and in particular with regard to further political activities and initiatives at European level.
EFCCA together with the European Patient Forum (EPF) was invited to represent the patients´ view and to ensure that patients´ voices were heard during the stakeholder discussions.
A panel discussion was dedicated to the patients´ perception and perspective on the issue of biosimilars.
EFCCA chairman, Marco Greco, opened the panel session with a presentation stressing the importance of good-quality information that meets patients’ needs. He also called for shared decision-making and patient-professional communication to increase trust and enable patients to make informed decisions. Several of the interventions from the floor highlighted the worries and concerns from patient in particular on the issue of switching from biological medicines to biosimilars especially when treatment had been successful with the initial treatment option. Representatives from the industries stressed the safety of the biosimilar products and argued that the competitive prices allowed for more access to the latest treatment options.
Photos from left to right:
Cornelia Sanders, from the German IBD association, DCCV, representing patients during the doctors panel discussion. Photo in the middle, Robert Johnstone, Executive Board member of the European Patient Forum (EPF), during the panel disuccion on patients´ perception and perspective. Photo on the right: audience.
Photo on top of the page: Marco Greco, EFCCA chairman (left) presenting his speech.
UEG Week Barcelona 2015
October 24-28, 2015, Barcelona, Spain
UEG Week is the largest and most prestigious meeting of its kind in Europe, and many consider it to be the best digestive diseases meeting in the world.
It has been running since 1992 and now attracts more than 14,000 people from across the world. It features the latest advances in clinical management, the best research in GI and liver disease and includes several different kinds of symposia and fora, where cutting edge gastroenterology and hepatology is being discussed. More info at: https://www.ueg.eu/
EFCCA will be present in the exhibitors hall.Come and see us!