ECCO-EFCCA Patient Guidelines

Press conference at the 11th Congress of ECCO – Inflammatory Bowel Diseases

 

 

The highly anticipated ECCO-EFCCA Patient Guidelines will be presented at the Press conference on March 16, 2016 at the RAI Amsterdam.

 

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. The ECCO-EFCCA Patient Guidelines will be published on various channels (ECCO Website, EFCCA Website, IBD Patient Society Websites, ECCO News, Patient journals, etc.) in March 2016 and presented at the Press Conference on March 16, 2016 in Amsterdam.

 

For more information please contact the EFCCA office.

EFCCA Magazine 1/2016

The first issue of the EFCCA Magazine 2016 is now available.

We hope you enjoy reading about our latest activities, news from our members and other interesting articles related to IBD. Many thanks to those who have contributed to it.

Download EFCCA Magazine No 1 - 2016

World IBD Day 2016

Following initial discussions during the EFCCA General Assembly on possible actions for World IBD Day 2016, EFCCA has created a small working group with 7 of its members who have agreed on a common campaign entitled ¨Improving 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 (official date of World IBD Day). 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.

 

For more information please contact Isabella Haaf at This email address is being protected from spambots. You need JavaScript enabled to view it.

EFCCA AGM 2016

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.

EFCCA at European Commission workshop on Biosimilars

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.

 

A full report of the meeting will be prepared in the coming weeks. For more information please contact This email address is being protected from spambots. You need JavaScript enabled to view it.

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 2015

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!

 

World IBD Day 2015

This year more than 40 countries across the globe  joined  together in a unified effort to raise awareness about Crohn’s disease and ulcerative colitis in honor of  World IBD Day, held every year on May 19. This year’s efforts centered around a global video campaign encouraging anyone impacted by IBD to share their story in a short video with the unifying theme of  “United We Stand.”  Worldwide, five million people live with Crohn’s disease and ulcerative colitis.  
 

Watch the YouTube playlist

 
 
 
 
Show the world how IBD has impacted your life! Join others in their daily fight against IBD. 
 
 

Biosimilars and Biologics

BAB - Biologics Biosimilars Survey

The European Federation of Crohn´s and Colitis Associations (EFCCA) invites you to participate in this important survey on Biosimilars.

 

The purpose of the survey is to assess patients´ knowledge about biosimilars and to find out to what extent patients are aware of the issues involved around biosimilars medicines. The results of the survey will allow us to elaborate a common EFCCA position to effectively advocate for better patients rights with the medicine licensing authorities and relevant governments institutions.

 

The questionnaire consists of 14 questions and will require approximately 10 minutes to complete. 

 

The questionnaire is available in [English], [French], [German], [Italian] and [Spanish].

 

For Bulgarian, Greek and Serbian please follow this link and chose your relevant language. 

 

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.