Political Spotlight on Rare Diseases

Professor Sir Liam Donaldson, Chief Medical Officer for the United Kingdom, highlighted the increased need for awareness and understanding of rare diseases in his annual report for 2009 published this week (On the state of public health: Annual report of the Chief Medical Officer 2009).

His findings were echoed in an article in The Times newspaper by Sam Lister, where Sir Liam warned of the plight of individuals diagnosed with rare conditions. In the piece, he states “This is about patchy and fragmented services, poor co-ordination and lack of clinical awareness about the diagnosis. It’s not just poverty of access, but poverty of visibility and representation.”

Highlights of Sir Liam’s report include the recommendation of a ‘national clinical director for rare diseases’ and the proposition of national registers to facilitate improved surveillance, planning and research into the field of rare diseases.

Both the annual report and the Times article highlight the need for increased translational research and perhaps more importantly, the encouragement of the pharmaceutical industry to develop medicines for rare diseases; unfortunately since the demand for these kinds of pharmaceuticals is relatively low the ‘encouragement’ appears to take the form of financial incentives.

It’s great to see rare disease highlighted in both the political arena and the media so honestly. Hopefully, both The Times article and Sir Donaldson’s annual report will bring attention to the oft ignored world of ‘orphan diseases’, raising much needed public and political awareness.

From a BHD perspective, it’s comforting to know that a significant amount of basic, clinical and translational research into BHD Syndrome is being carried out globally, and that whilst it is classified as a rare disease, that doesn’t mean it’s been forgotten about.

www.BHDSyndrome.org – the online reference site for anyone interested in BHD Syndrome

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