Document: informative

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 personalised care and offering a higher quality of life of patients with IBD.

The Indirect Costs of IBD

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. www.ibdcosts.eu Within the framework of World IBD Day 2019 the European Federation of Crohn’s and Ulcerative Colitis Associations (EFCCA) is supporting a new study which aims to assess the indirect or invisible costs of Crohn’s disease and ulcerative colitis, collectively known as Inflammatory Bowel Disease (IBD).

Surgery in IBD

There are some topics that are hard to discuss, for which people may not want to share their opinions.  Surgery in people with Inflammatory Bowel Disease (IBD) is one of these neglected topics. It is, howwever, extremely relevant and important to collect information about the perception of surgery, the impact on the quality of life, and worries baout it.

We are looking for people with IBD who can provide us their views about surgery, by completeing a survey that lasts about 15 minutes.

Open Call for Patient Input – Joint Assessment on a medicinal product for UC.

EUnetHTA deems patient involvement very important in the production of Joint Assessment reports. We recognise that patients and those who support them have unique knowledge about what it is like to live with a specific disease or medical condition. We believe patient groups can help us understand patients’ unique perspectives by collecting and presenting patients’ and carers/care-givers’ views and experiences by engaging with a wide range of patients.