Projects

Patient Preferences

There is very little scientific evidence on patient preference targeted at the IBD patient community. This is why EFCCA decided to embark on this project which started in 2020 with an in-depth literature review and a cooperation agreement with KU Leuven university (Belgium). KU Leuven had already run a country level survey on IBD patient preferences which,  together with other...

Horizon 2020 - ImmUniverse

EFCCA  is involved in an exciting EU Research Project under the Innovative Medicines Initiative (IMI 2) (Horizon 2020). The ImmUinverse project main goal is the improved diagnostic and therapeutic options for patients living with ulcerative colitis and atopic dermatitis. New insights into disease severity and progression will enable personalised therapy for each individual...

Horizon Europe - GENEGUT

The GENEGUT project will transform the treatment of ileal CD by developing a first-in-class oral RNA-based therapy, tackling inflammation locally in the intestinal tissue, while avoiding systemic side effects. Despite advances in new immune modulators and biological treatment, up to 30% of patients become non-responders. Besides, intestinal fibrosis is a significant challenge in Crohn’s...

EFCCA Academy

One of our flagship activities in terms of patient empowerment is the EFCCA Academy. The Academy was launched in 2018 to provide specialized training for people with IBD enabling them to raise awareness on specific topics and to become advocates for their IBD patient community. Academy qualified patients will become trainers of trainers within their own local community. Training usually takes...

Horizon 2020- IDEA- FAST

EFCCA is involved in this exciting project that will identify digital endpoints that provide reliable, objective and sensitive evaluation of activities of daily living and Health-related quality of life (HRQoL) in ImmuneMediated Inflammatory Diseases such as IBD as well as other such as Rheumatoid Arthritis and Lupus and which will ultimately have a positive impact on the quality of life of these...

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. EFCCA has rapidly moved across a...

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!  Go to Patient_Survey Poster_ECCO2020_0.pdf Go to poster...

My IBD Journey - animation series

EFCCA has been involved in an exciting project aimed at helping people to ‘live well’ with IBD. We have developed a series of animation videos that will equip people with practical advice and relevant information and hopefully will bring about positive changes to the way they cope with their disease. The topics are as follows: My IBD Journey: "Life after IBD diagnosis" My IBD Journey...

IBD and Fatigue

Fatigue is an important underecognized clinical problem in patients with IBD and one of the most frequently reported concerns of patients. It affects nearly 50 % of patients in clinical remission and 80% of those with active disease, resulting in a decrease in quality of life and impaired work productivity and functioning. Fatigue is a debilitating, multidimensional and multifactorial...

Transition from pediatric to adult care

Transitioning through paediatric and into adult care is a critical time for patients and, if not carried out effectively and appropriately, can impact on education, mental health and patient outcomes. It has become clear that this is a major issue for patients, their carers and clinicians and that the transition process within and across Europe urgently needs reform. Within this context, the...