All Party Parliamentary Group on Rare, Genetic and Undiagnosed Conditions

News update courtesy of Genetics Alliance UK. 

 

Genetics Alliance UK are pleased to announce that the All Party Parliamentary Group (APPG) on Rare, Genetic and Undiagnosed Conditions has been re-established. Vicky Ford MP (Chelmsford) and Stephen Twigg MP (Liverpool West Derby) were elected as co-chairs. Genetic Alliance UK will continue to provide the secretariat to the APPG.

On 11th October 2017, the APPG held a second hearing on access to rare disease medicines in England. This was an opportunity to hear from a number of guest speakers about their experiences of the commissioning processes under NICE and NHS England in accessing rare disease medicines. There was also the opportunity to hear from patient organisations about the difficulties they have faced in trying to access medicines. 

Genetic Alliance UK will take forward the recommendation from the APPG that there needs to be a new commissioning approach that tackles are current issues that exist and makes rare disease medicines accessible to patients. 

For further information about the work visit APPG 

 


 Originally produced by Professor P. A. Farndon, Clinical Geneticist, Jim Costello (deceased) and Margaret Costello.  We are reliant on a team of medical advisors for the clinical content of the website. We are grateful for their continuing support. 
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