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.
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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