UK Strategy for Rare Diseases

Rare Disease UK (RDUK) has been campaigning for a UK Strategy for rare diseases.

RDUK has contacted us here at the Gorlin Syndrome Group with the following statement:

'An effective strategy for rare diseases would not only improve the quality of services and health outcomes for people with rare diseases, but would also ensure a more efficient use of NHS resources.  We have been working on behalf of our members to ensure a UK Strategy reflects the needs of the rare disease community. We met regularly with key policymakers and parliamentarians including one to one discussions with UK health ministers to assess the progress on the development of the stategy.  We campaigned for greater engagement in the strategy's development'. 

RDUK has indicated that they expect the UK Strategy for Rare Diseases to be published in late November 2013 and as a result they will be looking to generate media coverage to raise awareness of the strategy.  For more information visit RDUK website.

 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
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