We Are In The Fight For Their Lives

Duchenne is the biggest genetic killer of boys and you have probably never heard of it...

First They Learn To Walk And Run.
Then Duchenne Takes It All Away.

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1:3500 – 5000 boys and very rare girls are born with Duchenne

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There are 1000 people living with Duchenne across Australia

no-cure

There is currently no cure

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Life Expectancy is mid 20’s

Inspiring Hope and Change

Our role to create a better future for those living with Duchenne and associated dystrophinopathies.

Raising Awareness

Across the community of the impact of this insidious condition and the impact on those living with Duchenne and dystrophinopathies and their families and the need for support.

Research

Accelerate opportunities for all Australians living with Duchenne and associated dystrophinopathies, to be involved in protocol development, clinical trials and decisions about what’s impactful to the community as we work towards a cure and a better future for all.

Advocating (Raising Our Voices)

To government for equitable access to care, support, education, equipment, opportunities, research, clinical trials and emerging therapies.

Providing Support

By networking with peers and mentors, providing information and webinars we will be empowering conversations and developing a deeper sense of community, collaboration and hope.

Data Collection

Working closely with the Australian Neuromuscular Disease Registry and international collaborations, pertaining to patient experience data, and HTA process we will improve and expand data collection and make this data and Australian specific perspectives part of the international fight for a cure for all.

Providing Education and Resources

To empower the community through knowledge, training and sense of community to make informed choices / decisions.

Help Us End Duchenne

Join the Registry

If you are a person or family living with Duchenne or dystrophinopathies, you can help us build a platform to discover new therapies and advance scientific knowledge for these rare diseases.

Donate

Your donation will help fund vital research, advocacy and ultimately change for families who are living with Duchenne. and associated dystrophinopathies.

Fundraise

If you would like to fundraise for us by hosting an event, participating in an activity or want some ideas how to get involved please reach out to us, we would love to hear from you.