Duchenne Australia

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Perth, WA
Duchenne Australia

Duchenne Australia is a national, parent-led organisation driving support, advocacy and research for the Duchenne community across Australia.

21/07/2026

🏃‍♀️CITY2SURF 2026 – TEAM DUCHENNE AUSTRALIA IS READY!🏃‍♂️

In just a few weeks, our incredible Duchenne Australia team will be taking on 14km at City2Surf.

Some of us will be running. Some of us will be walking. But every single step is for the boys and young men living with Duchenne muscular dystrophy.

Every kilometre helps raise awareness. Every donation helps us continue funding support programs, advocacy, research and better care for families across Australia.

💙 Please get behind our team by making a donation. No matter the amount, it all makes a difference.
https://city2surf26.grassrootz.com/duchenne-australia/duchenne-aus

👉 Are you running City2Surf too? We'd love you to join Team Duchenne!

We have a limited number of our exclusive Duchenne Australia running shirts available. If you'd like to wear one on race day, email us at [email protected]

🍻 Running the race and keen to celebrate afterwards? We'd love to meet fellow supporters! Get in touch via email and we'll send you the details of our post-race catch-up.

Let's show families living with Duchenne that they're never walking this journey alone.

10/07/2026

This image perfectly captures what living with Duchenne muscular dystrophy can feel like.

Most of us see a knife and fork. A person living with Duchenne may see a workout. Every bite, every lift, every movement requires muscles that are becoming weaker over time.

It's a powerful reminder that many of the biggest challenges people face are invisible.

Let's not take the simple things in life for granted - and let's continue raising awareness of the everyday realities of Duchenne. 🍽

01/07/2026

Our webinar recording is now live! 🎥

If you couldn't join us live - or you'd like to watch it again - you can now access our Emerging Therapies & Clinical Trials webinar on our website.

Featuring expert presentations from Dr Ian Woodcock, Dr Michelle Lorentzos and Dr Eppie Yiu, the session explores:
✔️ Emerging therapies
✔️ Clinical trials
✔️ The Australian Neuromuscular Disease Registry
✔️ What this all means for Australian families

🔗 Watch now https://www.duchenneaustralia.org/webinars

24/06/2026

Reminder to register for our webinar next week! https://us02web.zoom.us/webinar/register/WN_d5jfXZNgTJGWYl-nSoIW-A

13/06/2026

Many of us remember the day we received our child’s diagnosis. The conversations, the information we were given (or not given), and the support available in those first days and weeks can have a lasting impact on families.

Researchers from the University of Melbourne are seeking parents and caregivers of children with a genetic condition to participate in a 90-minute online focus group exploring experiences of receiving a diagnosis and how communication within healthcare can be improved.

For Duchenne families, your perspective is incredibly valuable. By sharing your experience, you can help shape a more compassionate, informed and family-centred diagnostic journey for future families facing life-changing news.

📍 Online focus group (90 minutes)
📍 Parents and caregivers of children with a genetic condition
📍 University of Melbourne research study

🔗 https://linktr.ee/GenComm_Res for more information and to register your interest.

07/06/2026

🔬 WEBINAR: Emerging Therapies & Clinical Trials in Duchenne

The Duchenne treatment landscape continues to evolve, with new therapies, clinical trials and research opportunities emerging around the world.

Join Duchenne Australia for an informative webinar designed to help families better understand:
• Emerging therapies, including gene therapy, exon skipping, anti-inflammatory and muscle regeneration approaches
• What clinical trial participation involves and what families can expect
• The Australian Neuromuscular Disease Registry (ANMDR) and why enrolment matters

Featuring:
🎙 Dr Ian Woodcock
🎙 Dr Michelle Lorentzos
🎙 Dr Eppie Yiu

This session is designed to provide practical, evidence-based information to help families better understand the current landscape and prepare for future opportunities.

📅 Tuesday 30th June
⏰ 7:30pm AEST
📍 Online, Zoom

🔗 Register: https://us02web.zoom.us/webinar/register/WN_d5jfXZNgTJGWYl-nSoIW-A?utm_source=ig&utm_medium=social&utm_content=link_in_bio&fbclid=PAdGRleASR7OBleHRuA2FlbQIxMQBzcnRjBmFwcF9pZA8xMjQwMjQ1NzQyODc0MTQAAacEUZq2lf6nFcncxPUWscJ_VFb2K_Io8INH2rLDcpCxYKppTFMedMdqkKLhfA_aem_qhvjulHLuko08OAOkfyOgw #/registration

Questions are welcome and can be submitted during registration. Speakers will address common themes during the webinar. Please note that individual medical advice and mutation-specific questions will not be discussed.

04/06/2026

Representing Australian Duchenne families at ANN & AOMC 2026 🇦🇺

We were proud to present our poster on translating UK Duchenne Standards of Care for the Australian community - helping empower families with clear, accessible guidance on what best-practice care should look like.

The response from clinicians and collaborators has been fantastic, with many keen to get involved as we move this work forward.

Now looking forward to Family Day and spending time with the people who matter most - our Duchenne families ❤️

26/05/2026

Duchenne Australia was proud to be specially invited by the World Duchenne Organization to present at a global roundtable in Madrid as part of the PPMD Spain Annual Conference, representing Australian Duchenne families on the world stage.

Our invitation reflected the growing international interest in Australia’s evolving Duchenne landscape - including standards of care development, clinical trial readiness, multidisciplinary expertise, and the highly motivated Australian Duchenne community.

Throughout the conference, Australia was repeatedly referenced in discussions around global trial sites, future opportunities and increasing industry interest - recognition of the advocacy, collaboration and momentum being built nationally.

Most importantly, we left Madrid with a strong commitment toward future international collaboration, ensuring Australian families remain connected to global progress in care, research and emerging therapies.

Our purpose remains clear: driving forward progress, access and better outcomes for all Australians impacted by Duchenne.

Thank you to the World Duchenne Organization and Duchenne Parent Project España for the opportunity to contribute to these important global discussions.

08/05/2026

Huge congratulations to our friends at 🇬🇧

After years of advocacy, collaboration and determination, NICE has recommended givinostat for use on the NHS in England for eligible people living with Duchenne.

This is an incredibly important milestone for families and a powerful reminder of what strong patient advocacy can achieve.

We are so proud to stand alongside organisations like Duchenne UK who continue to push for better outcomes, faster access, and a brighter future for the Duchenne community worldwide.

Duchenne Australia is actively working with industry partners, clinicians, hospitals and the broader Duchenne community to help progress access pathways for therapies like givinostat here in Australia. While there is still work ahead, milestones like this strengthen momentum and reinforce what is possible through collaboration, advocacy and continued progress.

Address

Wellington Street
Perth, WA
6005

Website

http://duchenneaustralia.org/

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