Question to the Department of Health and Social Care:

To ask the Secretary of State for Health, what steps his Department is taking to promote awareness of scleroderma to health professionals and the wider public.

There are between 5,000 and 8,000 rare diseases. Each one affects less than 0.1% of the United Kingdom’s population, but together affect the lives of 3 million people making considerable demands on the resources and capacity of the National Health Service and other care services.

In 2013, the Department published the UK Strategy for Rare Diseases. This is a high-level framework committed to raising awareness about all rare diseases and sets out a strategic vision for improving the lives of all those affected with rare disease. A copy of the Strategy is attached.

The Department also recently collaborated with Health Education England and others to produce two videos about rare diseases, one focusing on healthcare professionals, particularly general practitioners, as the first point of NHS contact, the other providing information for patients and parents about rare diseases. These videos can be viewed on Health Education England’s website at:

http://www.genomicseducation.hee.nhs.uk/rare-disease-and-the-potential-of-genomics/