UK Rare Disease Framework launched to improve diagnosis and treatment of rare diseases

A new government strategy to improve the lives of people living with rare diseases, across the 4 nations of the United Kingdom, has now been launched. The UK Rare Disease Framework, following on from the previous Rare Disease Strategy, has been designed around the views and experiences of those living with rare diseases. The rare-disease community helped to identify 4 key priority areas to bring about real change for patients set out by the      Framework: 1. Improve the speed of diagnosis; 2. Raise awareness of rare diseases amongst healthcare professionals; 3. Improve the coordination of care throughout the patient journey, and; 4. Improve access to innovative treatments and specialist care. The Health Ministers of England, Wales, Scotland and Northern Ireland have stated that they will ensure that the patient voice will remain central throughout the implementation of the framework, and that this will include working to understand how the experiences of patients and their families through the coronavirus pandemic.   

Sue Millman, Ataxia UK’s CEO, has been involved in a number of the consultations involved in the development of the new Framework. Ataxia UK very much welcomes the publication of the new Rare Diseases Framework which aims to address the most significant issues for the rare disease community. The challenge is in delivery of the Framework, especially at the present time. In particular we believe the aspiration for each UK country to produce the implementation plans by the end of 2021, with no timetable yet established for their production is ambitious. In addition, in England, we are concerned at the differing responsibilities of the Department of Health and NHS England, which, under the previous Rare Diseases Strategy, meant that they each produced separate plans for England which weren’t combined into one plan. Sue Millman has sought and gained reassurance in writing from those managing the production of the English implementation plan, that this error won’t be repeated! 

The UK Rare Diseases Framework can be viewed here.