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APPG Agrees Access To New Medicines For Rare Conditions Isn't Working

26 October 2017

The APPG (All Party Parliamentary Group) has been re-established with Genetic Alliance UK providing the secretariat. The inaugural meeting focussed on access to medicines. It took place on 11 October with a full discussion which acknowledged the many problems there are with the current ‘unnecessarily long processes’ governing access.

Genetic Alliance UK was challenged to work with a range of stakeholder groups to propose a method of making decisions about rare disease medicines that is ambitious, effective, transparent and fair. A new solution needs to be delivered to health ministers, NHS England and NICE. You can read the full briefing and the minutes.  

We look forward to Genetic Alliance UK’s leadership on this and to supporting this work.

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