- health research
- NIHR
- Professor Lucy Chappell
- collaboration
- ERDERA
UK formally joins rare disease research partnership
The UK has formally joined the European Rare Diseases Research Alliance (ERDERA), marking a pivotal moment for international scientific collaboration and offering renewed hope to millions of people affected by rare conditions
Rare diseases, individually uncommon but collectively significant, affect fewer than five in 10,000 people per condition. However, with over 7,000 identified rare diseases, the combined impact is substantial – touching around 3.5 million people in the UK and more than 300 million worldwide. This scale underlines the critical need for global partnerships to accelerate both research and clinical progress
Unlocking International Collaboration
The Department of Health and Social Care, through the National Institute for Health and Care Research, has taken a leading role as the first UK funder to co-finance calls for proposals under the alliance. This step signals a strong commitment to embedding UK science within global research efforts
Professor Lucy Chappell, CEO of the NIHR, emphasised the significance of this collaboration:
“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 reove outcomes for patients.”
Driving Research Through Horizon Europe
The initiative is closely aligned with the UK’s renewed participation in the Horizon Europe programme, following reassociation in January 2024. Funding linked to ERDERA forms part of Phase 2 commitments, ensuring UK researchers can both contribute to and benefit from collaborative cross-border projects
This development strengthens UK–EU research ties and enhances the UK’s position within a broader portfolio of Horizon Europe health partnerships. It also reinforces national priorities set out in the UK Rare Diseases Framework, particularly around improving early diagnosis, accelerating research, and providing patients with faster access to cutting-edge treatments
What This Means for the Health Sector
For healthcare leaders and professionals, the UK’s participation in ERDERA presents a range of opportunities:
- Expanded clinical trial access: UK institutions can join multinational studies, increasing patient access to emerging therapies.
- Accelerated innovation: Shared expertise and data will help shorten development timelines for diagnostics and treatments.
- Stronger patient engagement: Collaboration with international patient groups ensures research remains patient-centred.
Importantly, the partnership opens its first major funding opportunity in 2026. The international clinical trials call includes a mandatory Expression of Interest (EOI) phase running from 1 July to 10 September 2026. Applicants are advised to review eligibility requirements carefully for each call
A Transformational Step Forward
The UK’s entry into ERDERA is more than a funding commitment – it represents a strategic shift toward deeper global integration in tackling rare diseases. By aligning research, reto accelerate breakthroughs that could transform patient outcomes
For the NHS, research bodies, and life sciences organisations, this marks a critical opportunity to play a leading role in shaping the future of rare disease care
Image credit: iStock
