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"Working together we can secure the best use of scarce expertise and resources, maximising the health gain for all those with rare conditions" Alastair Kent OBE, Chair of RDUK


Website Documents /rare-disease-open-letter.pdfYou are here: Home /OpenLetter

Support our open letter to the leaders of the UK's main political parties   

It's been a year since the publication of the UK Strategy for Rare Diseases, which aims to ensure that people living with a rare disease have access to the best care and treatment that health and social services can provide. The UK Strategy is the first time since the establishment of the NHS that patients and families with rare diseases have a clear and strong commitment from Government to meet their needs. The document is signed by all four health ministers of the UK with support from across the political spectrum.

There's been much progress - the Implementation Plans for Scotland, Wales and Northern Ireland have been published as well as the Statement of Intent from NHS England. However, there is a risk that all 51 commitments in the UK Strategy for Rare Diseases will not be implemented. 

With a General Election fast approaching, it is important that we do not lose traction. That is why RDUK and the Tuberous Sclerosis Association have written an open letter to raise awareness of the UK Strategy for Rare Diseases and to David Cameron, Ed Miliband and Nick Clegg to reaffirm their commitment to the UK Strategy for Rare Diseases. The open letter has been supported by over 70 organisations from the rare disease stakeholder community and can be viewed here.

We are now asking all members to write to their local MP to ask them to support the open letter. Members can find out who their local representative is here and a template letter is available here. 

If you have any questions please email Farhana: