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 is embarking on exciting new research with Takeda to find out the impact of complex perianal fistulae on quality of life from Crohn’s disease patients’ perspective. Crohn’s disease patients both with and without perianal fistulae are invited to participate.
The Yellowstone Crohn’s Disease Clinical Research Program
New survey on the indirect costs of IBD. The aim of the study is to assess the influence of IBD on the patients productivity at work and relevant costs for society.
IBD and parenthood - Survey on couples with IBD and their offspring
EFCCA Academy - Training Certified Patient Experts
EFCCA is embarking on an exciting new project under the title "EFCCA Academy- Training Certified Patient Experts". The pilot phase will be launched mid 2018.
EFCCA is involved in an exciting project aimed at helping people to ‘live well’ with IBD. We are developing 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.
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.
In the last two years the issue on biologics and biosimilars has received a lot of attention from the medical, regulatory and patient community. Licensing rights of biological medicines used in the treatment not only of IBD but also other autoimmune modulated diseases are coming to an end and biosimilars medicines are being developed to compete with original biological treatment options. In various countries in the EU and elsewhere biosimilars have already entered the market.