News & Updates

Sarepta Therapeutics  Shares Safety Update  on ELEVIDYS
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
Dyne Therapeutics Announces New Long-Term Clinical Data from Phase 1/2 DELIVER Trial of DYNE-251 in Duchenne Muscular Dystrophy Demonstrating Unprecedented...
Edgewise Therapeutics Topline results from phase 2 Becker Canyon trial of Sevasemten
 - Trial met primary endpoint of reduction in circulating levels of creatine kinase (CK), a biomarker associated with skeletal muscle...
Update to the Duchenne  Community from  Percheron Therapeutics  on Progress with Avicursen
Dear Members of the Duchenne Community, Today, Percheron Therapeutics, a public company registered in Australia and focused on developing treatmentsfor...
No Life Insurance  Discrimination For Those  With a Genetic Condition
Australian Government bans genetic discrimination in life insurance: A big win for preventive health Following the recommendations of a report led...
Final Letter for Philips Recall
Philips after consultation with TGA is conducting an Urgent Product Defect Correction for the Philips BiPAP A40 Pro Ventilator, BiPAP...
Update to Urgent Product Defect Alert TGA Ref RC-2024-RN-00257-1- Philips Ref 2023-CC-SRC-039
Philips after consultation with TGA is conducting an update to the Urgent Product Defect Alert of Philips BiPAP A30, BiPAP...
Pfizer Phase 2 Daylight Study Update
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Pfizer gene therapy clinical trials commence in Australia
Pfizer gene therapy clinical trials commence in Australia! The first Australian boy has been screened as part of the Pfizer...
“New Frontiers” Launched
The long awaited Federal Parliamentary Inquiry report into Approval Process for New Drugs and Novel Technologies has now been released....
GP Submission
Save Our Sons Duchenne Foundation has just written a submission on behalf of our community to the Senate Standing Committee...
SOSDF to capitalise on the Queensland Parliamentary Inquiry into Social Isolation and Loneliness
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)?
Are you on the Australian Neuromuscular Disease Registry (ANMDR)? With an increasing number of pharmaceutical companies interested to run clinical...
Sarepta Therapeutics Reports Positive Clinical Results from Phase 2 MOMENTUM Study of SRP-5051 in Patients with Duchenne Muscular Dystrophy Amenable to Skipping Exon 51
Sarepta Therapeutics has shared an update about themulti-ascending dose clinical trial of SRP-5051 for patients with Duchennemuscular dystrophy who are...
Sarepta Therapeutics to Share Clinical Update for 30 mg/kg arm of MOMENTUM Study for SRP-5051
Sarepta Therapeutics has, last week, announced thatthey will be hosting a webcast and conference call to present resultsfrom the 30...
Commonwealth Inquiry into Independent Assessment For NDIS
Dear members of the Duchenne and Becker community.   You may recall that just prior to Christmas we advised of...
Have Your Say On NDIS
You may be aware that the National Disability Insurance Scheme (NDIS) is currently undertaking a consultation process with NDIS participants...
SOSDF NDIS Information Session
Yesterday, Save Our Sons Duchenne Foundation hosted an NDIS Information Session. The aim of the session was for families to...
SOSDF Carriers Information Session
Today, Save Our Sons Duchenne Foundation hosted a Carriers Information Session. The aim of the session was to provide an...
NSW Parliamentary Inquiry – Rural, Regional and Remote Health and Hospital Services.
SOSDF would like to thank all parents and carers who recently participated in our consultation process reviewing health and hospital...
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