EFCCA Academy 2020 - Training Certified Patient Experts

We are pleased to announce our new edition of the EFCCA Academy offering specialized training for IBD patients.  

The EFCCA Academy was created in 2018 following the results of several major surveys that highlighted the main unmet needs of the IBD community. Our pilot project was aimed at providing specialized training addressing some of these unmet needs and appointing Certified Patients to raise awareness on IBD.

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”?

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.

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?”

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 due to the lockdowns and restrictions in our daily habits have a significant impact on our mental well-being.

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 IBD.

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. 

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

The results of the survey are now available.