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Response to the formation of the All Party Parliamentary Group on Huntingdon's disease

  • Published date:
    30 June 2010

New research into the number of people suffering from Huntingdon’s Disease has been published, while an All Party Parliamentary Group was established to look at the disease. Care Services Minister Paul Burstow said

'We recognise that the stigma of the condition has resulted in the disease being under reported in the past. Less than one in five people known to be at risk of inheriting Huntington's disease choose to have the genetic test which can confirm a diagnosis for this condition. Whether to have the test is often a difficult a personal choice as there is currently no cure, and the progression of the disease cannot be slowed down or reversed.

'We acknowledge the work of the Huntington's Disease Association in tackling the stigma surrounding Huntington's disease and providing much welcomed support, help and advice for people affected by the condition. Supporting people with conditions as Huntington's disease will be a priority for this government and our plans to strengthen local autonomy and accountability will ensure that local services better reflect the needs of their patients living with neurological conditions such as Huntington's disease.

'We also welcome the establishment of the All-Party Parliamentary Group on Huntington's disease, which will help raise awareness of and give people with Huntington's disease and their families a voice and the opportunity to influence politicians and decision makers.'

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