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News

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Sign up deadline for Ride London 100 – TOMORROW!

30 May 2019 by Lynnette

The Prudential Ride London-Surrey 100 is a perfect traffic-free ride for a range of cycling abilities! Born out of the cycling legacy of the 2012 …

Sign up deadline for Ride London 100 – TOMORROW!Read More

Parents present to healthcare officials

29 May 2019 by Lynnette

Last Friday, Lynnette Ellison our Community Fundraising & Marketing Officer presented Duchenne from a Parent's Perspective to healthcare officials …

Parents present to healthcare officialsRead More

Gene therapy trial update from Solid

16 May 2019 by Neil

Solid Biosciences has announced that the next stage of their clinical trial of a gene therapy has started, following the dose increase announced in …

Gene therapy trial update from SolidRead More

Catabasis opens new UK sites in Edasalonexent trial

20 April 2019 by abzali123

Catabasis has announced that their trial of edasalonexent is now open at 2 centres in the UK. Sites in Bristol and Manchester are recruiting and two …

Catabasis opens new UK sites in Edasalonexent trialRead More

Wave announces trial results and new trial plans

16 April 2019 by abzali123

Wave Life Sciences have today announced the results of their early stage phase 1 clinical trial of Suvodirsen, as well as their plans for a much …

Wave announces trial results and new trial plansRead More

Department for Transport Meeting

3 April 2019 by abzali123

Yesterday our CEO, Shelley, was invited to the House of Commons to meet with the Secretary-under-State for the Department of Transport, Nusrat Ghani …

Department for Transport MeetingRead More

Match funding brings Trustee’s fundraising to over £4,000

3 April 2019 by abzali123

A fortnight ago, one of our wonderful Trustees, Sarah Colvin, braved the elements and completed her cycle from London to Penzance. Facing windy hill …

Match funding brings Trustee’s fundraising to over £4,000Read More

Santhera announces plans to apply for conditional approval for Puldysa

29 March 2019 by abzali123

Santhera Pharmaceuticals has announced plans to submit an application for Conditional Approval for Puldysa (also known as idebenone and Raxone) for …

Santhera announces plans to apply for conditional approval for PuldysaRead More

Sarepta Therapeutics announces preliminary results in casimersen (exon 45 skipping) trial

28 March 2019 by abzali123

In a press release earlier, Sarepta Therapeutics announced results of an interim analysis of the casimersen part of their late stage, phase 3 ESSENCE …

Sarepta Therapeutics announces preliminary results in casimersen (exon 45 skipping) trialRead More

Study investigates bone health in Duchenne

26 March 2019 by abzali123

A recently published study has found that boys treated with daily Deflazacort (a corticosteroid) have more fractures than boys treated with other …

Study investigates bone health in DuchenneRead More

Jonny Gould becomes an Ambassador for Action Duchenne

25 March 2019 by abzali123

We are delighted to announce that television and radio broadcaster Jonny Gould has become an ambassador for Action Duchenne. Jonny is a presenter and …

Jonny Gould becomes an Ambassador for Action DuchenneRead More

Annemeike standards of care video news article

20 March 2019 by abzali123

…

Annemeike standards of care video news articleRead More

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