INTERNATIONAL FEDERATION OF CROHNS AND ULCERATIVE COLITIS ASSOCIATIONS

Their core work

This is an international patient advocacy federation representing people living with Crohn's disease and ulcerative colitis (IBD — inflammatory bowel disease). Their core work involves amplifying the patient voice in medical research, facilitating access to patient communities for clinical studies, and ensuring research priorities reflect what actually matters to patients: quality of life, fatigue, daily functioning, and treatment outcomes. In EU research consortia, they serve as a bridge between scientific teams and large patient populations across multiple countries, contributing patient-reported data, community engagement, and disease-lived-experience expertise that clinical researchers cannot replicate internally.

What they specialise in

How they've shifted over time

Their first project (IDEA-FAST, 2019) positioned them squarely in the patient-experience measurement space — digital tools to capture what patients feel daily: fatigue, disrupted sleep, loss of functional capacity. The second project (ImmUniverse, 2020) shifted the context toward molecular biology — gut and skin microenvironments, multi-omics, immune profiling — where their role is to anchor biological research to patient-relevant outcomes in Crohn's, ulcerative colitis, and atopic dermatitis. The trajectory is short (both projects started within a year) but meaningful: from measuring the patient experience toward helping make sense of disease biology in patient terms.

They are moving from functional patient measurement tools toward deeper engagement with molecular research consortia, suggesting growing ambition to shape the science of IBD treatment response, not just report on patient experience.

How they like to work

They have never led an H2020 project — both participations are as consortium partners, with very modest funding allocations (EUR 35,000 and EUR 50,312) typical of patient organization advisory roles in large RIA consortia. Despite this, they have connected with 83 unique partners across 18 countries across just two projects, which confirms they join high-profile, large-scale European research consortia. Working with them means access to an international IBD patient network and patient community engagement channels, not a technical research team.

Despite only two projects, this organization has worked alongside 83 unique partners spanning 18 countries — a broad European footprint driven by membership in large multi-partner RIA consortia. Their Brussels base positions them close to EU health policy institutions, which likely amplifies their role beyond pure research partnership.

What sets them apart

As a federation — not a single national association — they aggregate IBD patient communities across multiple countries, giving research consortia access to a scale of patient engagement that no single country-level organization can match. Their dual disease focus (Crohn's and ulcerative colitis) and involvement in both digital health endpoints and molecular disease biology makes them a credible partner across a wide range of IBD research designs. For any consortium seeking genuine patient and public involvement (PPI) credentials in immune-mediated disease research, this organization offers recognized international standing in the IBD community.

Highlights from their portfolio

• ImmUniverse
  The larger of their two projects (EUR 50,312), targeting the molecular microenvironments of gut and skin in immune-mediated diseases via multi-omics and liquid biopsy — a technically ambitious RIA where patient federation involvement anchors biological discovery to clinical and patient relevance.
• IDEA-FAST
  A pioneering effort to define digital endpoints for fatigue and activity of daily living in chronic diseases including IBD — directly relevant to the future of clinical trial design and regulatory approval of digital health tools.