The UK has joined the world’s largest rare-diseases research partnership, the European Rare Diseases Research Alliance (ERDERA).
This strategic partnership marks a significant milestone of collaboration for UK science. It offers hope for people and families in the UK who are experiencing a rare disease. Rare diseases by definition affect small numbers of patients. Fewer than five in every 10,000 people. But as there are more than 7,000 rare diseases, together they impact roughly 3.5 million people in the UK and over 300 million people globally. This makes international collaboration essential to speed up research and improve care.
This commitment opens new pathways for UK researchers to participate in international clinical trials, accelerating the pace of research to improve diagnosis and treatment for rare disease patients worldwide. The Department of Health and Social Care (DHSC), through the National Institute for Health and Care Research (NIHR), has become the first UK funder to co-fund calls for proposals through this alliance.
Professor Lucy Chappell, CEO of the NIHR, said: “Rare diseases can have a serious impact on patients and families, and progress depends on countries working together. Through ERDERA, UK researchers will be able to take part in international studies and clinical trials that aim to improve diagnosis and treatment of rare diseases. This partnership brings together expertise and resources from many countries, helping research move faster and improve outcomes for patients.”
ERDERA is the world’s largest rare-diseases research partnership. It brings together 180 organisations across 37 countries, including EU Member States and countries including Canada and Switzerland.
Funding for this partnership is part of the UK’s commitment to Phase 2 of the Horizon Europe partnership. It ensures UK researchers can access resources for collaborative international projects and rare disease clinical trials. Through this partnership, researchers can collaborate across borders - sharing expertise and connecting with patient groups. This helps bring research results to patients faster and increases the chances of developing better diagnosis and treatments. UK researchers will be able to take part in international studies and clinical trials through ERDERA. This will improve understanding of rare diseases and support the development of new treatments.
Following the UK’s reassociation to Horizon Europe in January 2024, this forms part of DHSC’s broader engagement across a portfolio of Horizon Europe health partnerships, strengthening the UK’s role in collaborative international research and supporting renewed UK–EU research cooperation through Horizon Europe.
The participation in ERDERA supports the UK Rare Diseases Framework and wider government priorities to improve diagnosis, speed up research, and help patients access better treatments sooner.
The 2026 international clinical trials call represents the first opportunity for UK researchers to access ERDERA funding through formal UK participation. The mandatory Expression of Interest (EOI) phase for this call is open until 10 September 2026.