Ehlers-Danlos Syndrome

Department of Health written question – answered on 9th December 2014.

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Photo of Ian Austin Ian Austin Labour, Dudley North

To ask the Secretary of State for Health, what recent discussions he has had with patient groups on Ehlers-Danlos Syndrome.

Photo of Norman Lamb Norman Lamb The Minister of State, Department of Health

Genetic Alliance UK, of which Elhers-Danlos Support UK are a constituent member, are part of the Department’s UK Rare Diseases Forum, which meets regularly to discuss issues of United Kingdom rare diseases policy and to monitor the implementation of the UK Strategy for Rare Diseases.

There have been no recent direct discussions between my Rt. hon. Friend the Secretary of State for Health and Ehlers-Danlos Syndrome patient groups.

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