UK signs up to European rare diseases network
The National Institute for Health and Care Research said membership of the European Rare Diseases Research Alliance will open “new pathways for UK researchers to participate in international clinical trials”.
The UK has signed up to the European Rare Diseases Research Alliance (ERDERA), in a move that has been described as a “significant milestone of collaboration for UK science”
ERDERA is an international partnership that includes 37 countries and more than 170 public and private organisations, aimed to support research into rare diseases and the translation of that research into medicines
It is funded by the EU, with contributions from member states and other public and private partners
A press release issued by the National Institute for Health and Care Research (NIHR)on 1 July 2026 said that the Department of Health and Social Care (DHSC), through NIHR, has become “the first UK funder to co-fund calls for proposals through this alliance“
“Rare diseases by definition affect small numbers of patients. Fewer than 5 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,“ the NIHR added
“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.”
Lucy Chappell, chief executive officer of NIHR, commented: “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.”
Expressions of interest for 2026 funding are open until 10 September 2026
Matthew Wood, director and chief scientific officer of the Oxford-Harrington Rare Disease Centre, said: “The UK’s participation in ERDERA is a welcome step. At the Oxford-Harrington Rare Disease Centre, we see first-hand that international collaboration is essential to advancing rare disease research, where small patient populations require researchers, clinicians and industry to work together across borders
“Initiatives like ERDERA can help strengthen the networks, translational infrastructure and multinational clinical trial opportunities needed to move promising discoveries more quickly towards new therapies. Continued support for collaborative research, innovative trial models and cross-sector partnerships will be critical if we are to deliver more treatments for patients living with rare diseases.“
The Medicines and Healthcare products Regulatory Agency (MHRA) has called for views on plans for a proposed ‘Rare disease therapies regulatory framework’, which it said would speed up access to rare disease treatments by using a compressed regulatory pathway
Conditions eligible for the framework would be those where no more than 1 in 50,000 people are affected, and there are quantifiable barriers to conducting a standard clinical trial
The consultation is due to close on 30 July 2026
Last updated 6 July 2026 11:28
Citation
The Pharmaceutical Journal, PJ July 2026, Vol 320, No 8011;320(8011)::DOI:10.1211/PJ.2026.1.418748
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