Save Our Sons Duchenne Foundation joined more than 1,400 international clinicians, researchers and neuromuscular professionals at a major muscle disease...

People and families living with rare diseases and disability have access to a suite of updated resources to help navigate...

The Save Our Sons Duchenne Foundation is deeply saddened by the passing of our dear friend and long-standing ambassador, Gary...

Save Our Sons Duchenne Foundation has joined the rare disease community at NSW Parliament House for an event focused on...

Access to care and support can change lives for families living with Duchenne muscular dystrophy. This year’s World Duchenne Awareness...

More than 500 people gathered in Sydney to support people living with Duchenne and Becker muscular dystrophy at Save Our...

 PTC Therapeutics Provides Regulatory Update on Translarna™  February 12, 2026  WARREN, N.J., Feb. 12, 2026 /PRNewswire/ -- PTC Therapeutics, Inc....

Friday, 28 November 2025, 9AM - 5:00PM Level 3, 48 Flemington Road, Parkville, Vic A one-day professional learning workshop for...

First returning adult patient from Phase 1b study recently dosed; additional returning patients being scheduled 11-month open-label study will evaluate...

Genetics Webinar Series - Events WEBINAR 1 Could It Be Genetic? If you've ever wondered whether there might be a...

CAMBRIDGE, Mass.--(BUSINESS WIRE)--Jul. 21, 2025-- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, today issued...

– New open label data in Becker demonstrated sustained disease stabilization up to three years, reinforcing prior clinical findings –...

CAMBRIDGE, Mass.--(BUSINESS WIRE)--Jun. 15, 2025-- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, today provided...

Dear Members of the Duchenne community,We are excited to share positive data following 48 weeks of dosing in the FORWARD-53...

The World Duchenne Organization is thrilled to announce that registrations are now open for the Duchenne Care Conference 2025. The...

CAMBRIDGE, Mass., March 18, 2025 -- Sarepta Therapeutics, Inc. (NASDAQ:SRPT), the leader in precision genetic medicine for rare diseases, shared...

Dyne Therapeutics Announces New Long-Term Clinical Data from Phase 1/2 DELIVER Trial of DYNE-251 in Duchenne Muscular Dystrophy Demonstrating Unprecedented...

 - Trial met primary endpoint of reduction in circulating levels of creatine kinase (CK), a biomarker associated with skeletal muscle...

Dear Members of the Duchenne Community, Today, Percheron Therapeutics, a public company registered in Australia and focused on developing treatmentsfor...

Australian Government bans genetic discrimination in life insurance: A big win for preventive health Following the recommendations of a report led...

Philips after consultation with TGA is conducting an Urgent Product Defect Correction for the Philips BiPAP A40 Pro Ventilator, BiPAP...

Philips after consultation with TGA is conducting an update to the Urgent Product Defect Alert of Philips BiPAP A30, BiPAP...

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Pfizer gene therapy clinical trials commence in Australia! The first Australian boy has been screened as part of the Pfizer...

The long awaited Federal Parliamentary Inquiry report into Approval Process for New Drugs and Novel Technologies has now been released....

Save Our Sons Duchenne Foundation has just written a submission on behalf of our community to the Senate Standing Committee...

Save Our Sons Duchenne Foundation (SOSDF) thanks all Queensland families and young people who have participated in our recent consultation...

Are you on the Australian Neuromuscular Disease Registry (ANMDR)? With an increasing number of pharmaceutical companies interested to run clinical...

Sarepta Therapeutics has shared an update about themulti-ascending dose clinical trial of SRP-5051 for patients with Duchennemuscular dystrophy who are...

Sarepta Therapeutics has, last week, announced thatthey will be hosting a webcast and conference call to present resultsfrom the 30...

Dear members of the Duchenne and Becker community.   You may recall that just prior to Christmas we advised of...

You may be aware that the National Disability Insurance Scheme (NDIS) is currently undertaking a consultation process with NDIS participants...

Yesterday, Save Our Sons Duchenne Foundation hosted an NDIS Information Session. The aim of the session was for families to...

Today, Save Our Sons Duchenne Foundation hosted a Carriers Information Session. The aim of the session was to provide an...

SOSDF would like to thank all parents and carers who recently participated in our consultation process reviewing health and hospital...

Murdoch Children’s Research Institute (MCRI) - Royal Children’s Hospital Melbourne Funding towards the position of Neuromuscular Clinical Trials Staff Specialist...

Catabasis Pharmaceuticals has announced the end of the Phase 3 PolarisDMD trial of edasalonexent in Duchenne muscular dystrophy. Edasalonexent is...

Save Our Sons have lodged a comprehensive submission to this most important Parliamentary Inquiry. As the peak body representing the...

  Save our Sons Duchenne Foundation have awarded the inaugural Alex Scollard Memorial PhD Scholarship to Dr Rajiv Wijesinghe. Dr Wijesinghe will...

  The Save Our Sons Duchenne Foundation Nurses Program was developed to ensure “Best Practice” clinical care for all with...