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News

You are here: Home / News

Sarepta Therapeutics Announces Positive Vote from U.S. FDA Advisory Committee Meeting for SRP-9001 Gene Therapy to Treat Duchenne Muscular Dystrophy

17 May 2023 by Mehreen Arif

Sarepta Therapeutics Announces Positive Vote from U.S. FDA Advisory Committee Meeting for SRP-9001 Gene Therapy to Treat Duchenne Muscular …

Sarepta Therapeutics Announces Positive Vote from U.S. FDA Advisory Committee Meeting for SRP-9001 Gene Therapy to Treat Duchenne Muscular DystrophyRead More

The story behind Ruth’s charity dinner dance

11 May 2023 by Lizzie Cox

The story behind Ruth's charity dinner dance Ruth and Ian Taylor tell us about their journey with Duchenne so far in this inspiring interview. Ruth …

The story behind Ruth’s charity dinner danceRead More

Take part in our Turning Point survey for a chance to win a £20 Amazon Voucher!

5 May 2023 by Lizzie Cox

We need you! Are you a parent/caregiver of a child living with Duchenne? Are you a teacher, TA, SENDCO or clinician working with someone living …

Take part in our Turning Point survey for a chance to win a £20 Amazon Voucher!Read More

Vamorolone NDA mid-cycle review meeting by FDA completed

27 April 2023 by Lizzie Cox

Vamorolone NDA mid-cycle review meeting by FDA completed Santhera Pharmaceuticals and ReveraGen BioPharma, Inc announce the successful completion …

Vamorolone NDA mid-cycle review meeting by FDA completedRead More

RAF Falcons support Action Duchenne for their 2023 display season

25 April 2023 by Victoria Edwards

Charity is very important to the RAF Falcons and every year they find time during their busy schedule to raise money for select charities nominated by …

RAF Falcons support Action Duchenne for their 2023 display seasonRead More

Yes I Can Residential Weekends 2023

13 April 2023 by Lizzie Cox

Yes I Can is running 3 residential weekends as part of our transition to adulthood project. These are open to all 16-25 year olds living with Duchenne …

Yes I Can Residential Weekends 2023Read More

Dyne Therapeutics Receives FDA Orphan Drug and Rare Pediatric Designations for DYNE-251 for the Treatment of Duchenne Muscular Dystrophy

25 March 2023 by Lizzie Cox

Dyne Therapeutics Receives FDA Orphan Drug and Rare Pediatric Designations for DYNE-251 for the Treatment of Duchenne Muscular Dystrophy Dyne …

Dyne Therapeutics Receives FDA Orphan Drug and Rare Pediatric Designations for DYNE-251 for the Treatment of Duchenne Muscular DystrophyRead More

Happy Mother’s Day

19 March 2023 by Lizzie Cox

Happy Mother's Day Today we celebrate all of the amazing Duchenne mummies in our community and want to let you know that we see the incredible job …

Happy Mother’s DayRead More

Moorside Primary school’s Holi celebrations raise money for Action Duchenne

15 March 2023 by Lizzie Cox

Moorside Primary School in North Yorkshire had the amazing idea of combining their Holi celebrations with fundraising for Action Duchenne. Inspired by …

Moorside Primary school’s Holi celebrations raise money for Action DuchenneRead More

Santhera submits marketing authorisation application to the UK MHRA for Valmorolone in Duchenne Muscular Dystrophy.

3 March 2023 by Lizzie Cox

Santhera submits marketing authorisation application to the UK MHRA for Valmorolone in Duchenne Muscular Dystrophy On March 2, 2023 – Santhera …

Santhera submits marketing authorisation application to the UK MHRA for Valmorolone in Duchenne Muscular Dystrophy.Read More

Hear about Science on Tour 2023 from our Science Officers

24 February 2023 by Lizzie Cox

Our Science Officers tell you more about Science on Tour 2023 Chief Scientific Officer Dr Mehreen Arif tells you all about the content of our SOT …

Hear about Science on Tour 2023 from our Science OfficersRead More

Santhera concludes agreement with French authorities on Raxone reimbursement and plans to submit request for an Early Access Program for Vamorolone

17 February 2023 by Lizzie Cox

Santhera Pharmaceuticals announces that it has secured a final reimbursement agreement with the French authorities related to Raxone® (idebenone) for …

Santhera concludes agreement with French authorities on Raxone reimbursement and plans to submit request for an Early Access Program for VamoroloneRead More

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