We are excited to share with the Duchenne community, that Santhera Pharmaceutical’s drug Raxone, is the first Duchenne drug approved via the Early …
Raxone is the first Duchenne drug approved through the Early Access to Medicines SchemeRead More
June 22, 2017 by abzali123
We are excited to share with the Duchenne community, that Santhera Pharmaceutical’s drug Raxone, is the first Duchenne drug approved via the Early …
Raxone is the first Duchenne drug approved through the Early Access to Medicines SchemeRead More
June 22, 2017 by abzali123
Over a number of years we have worked with Santhera Pharmaceuticals and other Duchenne charities in relation to Santhera’s Phase III Clinical Trial …
What Raxone being given approval through the EAMS scheme means for the Duchenne communityRead More
June 13, 2017 by abzali123
Thirteen members of staff from FHA completed the challenge in around eighteen hours, six hours ahead of the twenty-four hour deadline. They raised a …
FHA Wales staff present Three Peaks cheque to Action DuchenneRead More
April 6, 2017 by abzali123
Article by Kathy Wedell, mother of Isaac who was 13 in April 2017 when the article was written. Kathy played a leading role in the campaign …
March 24, 2017 by abzali123
We are thrilled to announce our funding of “UNITE-DMD”, the first gene therapy trials for Duchenne muscular dystrophy here in …
Action Duchenne Funding Gene Therapy to Advance Treatments for DuchenneRead More
January 6, 2017 by abzali123
On Tuesday 7 February 2017, Action Duchenne hosted a Scottish roundtable at the David Lloyd centre in Edinburgh. It provided an excellent opportunity …
An updated detailed review of our last Scotland roundtableRead More
December 9, 2016 by abzali123
This study is only open to boys in Scotland and although sufficient numbers of patients have been recruited in Glasgow, they are still recruiting from …
September 9, 2016 by abzali123
ReveraGen BioPharma have begun enrolment in the Phase 2a clinical trial of vamoroleone in the treatment of young people living with Duchenne muscular …
RevaraGen starts enrolment for steroid alternative clinical trialRead More
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
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 …
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
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
Action Duchenne
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info@actionduchenne.org