Open Your Mind
Open Your Mind! ...is the name of a game developed by our colleagues from Crohn & Colitis NL to talk with your family, friends, doctors, colleagues etc in an innovative way about IBD.
Empowerment
A narrative systematic review and categorisation of outcomes in Inflammatory Bowel Disease to inform a Core Outcome Set for real-world evidence
A narrative systematic review and categorisation of outcomes in Inflammatory Bowel Disease to inform a Core Outcome Set for real-world evidence
May, 2021
Heterogeneity exists in reported outcomes and outcome measurement instruments (OMI) from observational studies. A core outcome set (COS) for observational and real-world evidence (RWE) in inflammatory bowel disease (IBD) will facilitate pooling large datasets. This systematic review, describes and classifies clinical and patient-reported outcomes, for COS development.
HCP Training on Biosimilars
EFCCA has been collaborating with Medscape on a training session about biosimilars and the patients' perspective which is addressed to Healthcare providers. The training session includes a video simulation and a leaflet addressed to patients and to be distributed by physicians during their medical examination.
For more information about this project please contact the EFCCA office.
EFCCA Patient Talks
The global impact of COVID-19 has been overwhelming and without pause, accelerating at lightning speed, changing our lives and our way of seeing the world. In recent months, unfortunately, the philosophy of our organization, which is to create spaces for meeting, for dialogue between the various associations and all the interlocutors. has also had to change.
The Impact of Perianal Fistulae on a Crohn’s Disease Patient’s Quality of Life
Final Results available!
We are excited to share our findings of the survey “The impact of perianal fistula in Crohn’s disease on quality of life” which is being presented virtually at the 16th ECCO Congress (2nd – 3rd and 8th – 10th July, 2021.) Check out the e-poster with the full results!
ECCO EFCCA Patient Guidelines
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.
From EU citizenship to IBD-zenship 2013
Conference at the European Parliament, 17 October 2013
“Equal Rights for Citizens with IBD” was the main message emerging from the conference organized by EFCCA in cooperation with the European Crohn’s and Colitis Organisation (ECCO) and United European Gastroenterologists (UEG) which took place in the European Parliament on 17 October.
IMPACT survey
New IMPACT publication
On the occasion of World IBD Day, we are making available our latest publication of the IMPACT survey.
The survey was a joint project of EFCCA and its national member associations. It was launched in November 2010 and closed in August 2011. IMPACT II is now on-going in several other countries in and outside Europe.
Indirect costs of IBD
Survey on the indirect costs of IBD
The aim of the study was to assess the influence of IBD on the patients productivity at work and relevant costs for society.
IMPACT
The IMPACT survey was a joint project of EFCCA and its national member associations. It was launched in November 2010 and closed in August 2011.