We campaign across the UK to bring about change and make a difference to people affected muscle-wasting conditions
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Thursday 27 June 2013

Have your say: High cost drugs for rare diseases on the NHS

Do you or a loved one need access to treatments for muscular dystrophy or a related neuromuscular condition now or in the future? We need you to speak up.

An inquiry has been set up in the Houses of Parliament in order to plan ahead for how the NHS can deliver any high-cost treatments that become available for muscular dystrophy and other rare conditions.

Families affected by muscular dystrophy and related neuromuscular conditions, NHS leaders, MPs and Peers, pharmaceutical companies and licensing organisations are all working together to find solutions to the problems the NHS faces in delivering high-cost treatments for rare conditions such as muscle-wasting conditions.

The inquiry by the All Party Parliamentary Group for Muscular Dystrophy is focusing on:

  • identifying ways to speed up access to high-cost drugs for rare diseases
  • minimising delays and obstacles to people receiving treatment
  • examining the impact recent changes to the NHS could have on the future of treatments for rare diseases

Have your say - fill in our online survey by Sunday 4 August 2013
Alternatively, you can write a letter to Dave Anderson MP, Chair of the All Party Parliamentary Group for Muscular Dystrophy, at the Muscular Dystrophy Campaign, 61A Great Suffolk Street, London SE1 0BU, or email it to j.kingsley@muscular-dystrophy.org by 4 August 2013.

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