News

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

Results of COVID-19 IBD patients' perception

The results of the survey are now available. The current state of emergency related to the coronavirus (COVID-19) pandemic represents a difficult period for both patients and doctors, as we face a new enemy, of which little or nothing is known, and which requires everyone's collaboration to overcome the problem. For this reason, EFCCA has conducted a survey in order to better understand...

COVID-19

https://www.dccv.de/betroffene-angehoerige/leben-mit-einer-ced/infektion... people especially those with chronic diseases such as IBD and/or who are taking  immunosuppressant medications migth be concerned about the novel Coronavirus 2019 (COVID-19).  Below we have compiled information and guidance for this new virus from ECCO, EMA, IBD sister organisations available in...

EFCCA Symposium

EFCCA organised a symposium on “Digital Health and Data: IBD patients´ view and perspectives”  which took place during the ECCO Congress on 14 February 2020 from 14-15h in Vienna, Austria. This was an unique event bringing together IBD patients, healthcare providers and other stakeholder in order to start discussions on how digital health and big data can contribute in delivering more...