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  • About Us
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News

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Ten posts in place to support UK clinical trial capacity – Newcastle plan

August 15, 2016 by abzali123

In December 2015, eight patient organisations, who are working to help support clinical trial development for Duchenne muscular dystrophy, announced a …

Ten posts in place to support UK clinical trial capacity – Newcastle planRead More

PM replies to parents and patients on Translarna

June 9, 2016 by abzali123

After submitting a letter to No.10 Downing St on June 9, the Prime Minister David Cameron sent a host of replies to Action Duchenne yesterday to pass …

PM replies to parents and patients on TranslarnaRead More

Access to Medicines and the Campaign for Translarna (Ataluren) timeline

January 23, 2016 by abzali123

Since the start of 2015, Action Duchenne campaigned tirelessly for Translarna (ataluren) to be made available, exerting maximum external pressure upon …

Access to Medicines and the Campaign for Translarna (Ataluren) timelineRead More

Action Duchenne working with Scottish Family to get Translarna approved by SMC

January 15, 2016 by abzali123

Ross Munro, living with Duchenne, was first enrolled on the PTC Therapeutics trial of Translarna in 2008, and has been in receipt of the …

Action Duchenne working with Scottish Family to get Translarna approved by SMCRead More

The fight for Translarna goes on – Action Duchenne in parliamentary session

July 7, 2015 by abzali123

In light of NHS England’s non-decision on Translarna last week, Action Duchenne shared a platform with the MPS Society in parliament yesterday …

The fight for Translarna goes on – Action Duchenne in parliamentary sessionRead More

Press release: First ever treatment for rare muscle wasting condition, Duchenne Muscular Dystrophy, given conditional approval by the European Commission

August 7, 2014 by abzali123

Children living with a genetic muscle wasting condition called Duchenne Muscular Dystrophy (DMD) have hope of a different future after the first ever …

Press release: First ever treatment for rare muscle wasting condition, Duchenne Muscular Dystrophy, given conditional approval by the European CommissionRead More

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