All Party Parliamentary Group - Access to high-cost drugs for rare diseases - View News Article - Action Duchenne - Fighting for a cure for muscular dystrophy: Yesterday, Paul Lenihan – our CEO attended the Parliamentary reception briefing on the launch of the APPG’s report into access to high-cost drugs for rare diseases. Hosted and introduced by Dave Anderson MP, Action Duchenne endorses the four main recommendations contained within the report. These call for:
1. The Government to establish ring-fenced funds for rare disease drugs.
2. National Institute for Clinical Excellence (NICE) to access treatments for rare conditions in a different way from less rare conditions
3. NICE and NHS England to speed up access to life-changing drugs after final stages of clinical trials to ensure there are no major delays in treatments reaching children.
4. NHS England to ensure specialist centres are equipped with an appropriate range of health professionals to deliver treatments.
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