News
Study on Patient Preference
We are sharing information about a study to evaluate patient preferences for treatment goals in inflammatory bowel disease (IBD). The primary objective of this study is to evaluate and quantify patient preferences for IBD treatments, trading-off between different attributes of efficacy, complications/risks of treatment and health-related quality of life (HRQOL) in IBD. This will be a multi-...
ImmUniverse Website Launch
EFCCA is partner in an exciting #Horizon2020 project called ImmUniverse aimed at improving diagnostic and therapeutic options for patients living with #ulcerativecolitis and #atopicdermatitis. Go and check out the freshly launched @IMI_JU #ImmUniverse website! You can now keep yourself up-to-date on all major project developments by visiting www.immuniverse.eu #ulcerativecolitis #atopicdermatitis...
Clinical Trials Training
EFCCA Academy 2020 - Training Certified Patient Experts
We are pleased to announce that our new edition of the EFCCA Academy offering specialized training for IBD patients started on November 18th 2020 via the EFCCA online learning platform. This training will focus on Clinical Trials and is composed of 3 modules:
First Module: “...
EFCCA Patient Talks
COVID-19 psycho-social impact of lockdown in patients with IBD
“How did the IBD patient community cope with the lockdown?”, “Which is the real meaning of isolation for a person living with IBD?”, “What is really back to normal meaning? “Which role did the patient associations play in the lockdown”?
These amongst other questions reflect some of the concerns and fears expressed by IBD...
SECURE IBD
Coronavirus and IBD Reporting Registry!
Surveillance Epidemiology of Coronavirus Under Research Exclusion (SECURE-IBD) is an international, pediatric and adult registry to monitor and report on outcomes of COVID-19 occurring in IBD patients.
As of December 8, 2020, there have been 3,561 COVID-19 cases in IBD patients reported in SECURE-IBD with an increasing number of countries reporting ≥...
EFCCA Patient Talks
COVID-19 and medicines supply: “Are we running out of medicines?”
“Will I be able to access my biologics/biosimilars treatment?”, “Will my other IBD medicines be affected by COVID-19?”, “Are costs of my medicines likely to rise?”
These amongst other questions reflect some of the concerns and fears expressed by IBD patients in our recent survey on COVID-19 IBD patients´ perception. EFCCA is...
COVID-19, IBD and mental health
One effect of the COVID-19 pandemic which is given less importance in the media coverage is the effect it has on people´s mental health. Fears and worries are normal responses to any real or perceived threat and is not surprising that many people are coping with higher levels of fear and anxiety during the COVID-19 pandemic.
Besides the fear of becoming infected with the virus other changes...
10 TIPS FOR MAKING IBD WORK FOR YOU AT WORK
10 TIPS FOR MAKING IBD WORK FOR YOU AT WORK
by Sanna Lönnfors, EFCCA Research and Project Coordinator
I recently participated in an online focus group on the topic of Work and IBD, the theme of this year’s World IBD Day. With seven fellow IBD patients, we thought of our job hunts and careers, how IBD has or has not affected our working lives, and what advice we could give to others who have...
Work and IBD: patient stories
Make IBD work!
19 May World IBD Day – Awareness raising campaign
DRAFT..work in progress.....Patients from around Europe are telling us their stories on how IBD has affected their professional life.
SPAIN
Javier Alises, School teacher
When I was first diagnosed with Ulcerative Colitis, I was off sick...
Report on Digital Health and Data Collection Symposium
We are pleased to publish the report of our Symposium on Digital Health and Data Collection which took place on 14 February 2020 during the ECCO Congress in Vienna, Austria.
Download Report.pdf