We will provide education, support with a strong focus on mental health and resilience for families and those living with Duchenne. We will collaborate to achieve our goal of a cure for all, while we inspire hope.
Duchenne Australia strives for all Australians living with Duchenne and associated dystrophinopathies, to have access to evidence-based care, and the best possible quality of life, through advocacy for emerging therapies, research and clinical trials.
Achieving evidence based best standards of care for all Australians living with Duchenne or dystrophinopathies.
Provide information and support for the ‘Lifespan’ from diagnosis, through transition and beyond, developing a focus on ‘Care Across the Lifespan.’ This will be achieved by provide the community with evidence based care standards pertaining to Duchenne and associated dystrophinopathies that can inform the clinical community and empower all of those living with a dystrophinopathie and their families / carers to ensure they have access to the Australian perspective of the international care considerations from TREAT-NMD.
Focus on mental health of those living with Duchenne their families, carers and importantly siblings – through new diagnosis and for the lifespan, helping develop resilience and supportive strategies.
To provide the Australian community with regular peer support and networking opportunities through webinars, zoom and face to face events.
Develop community awareness strategies, social media campaigns and fundraising programs.
Sharing evidence-based resources across the community.
Work alongside the Government to ensure bipartisan support for our community and the wider rare disease community to guide the development of policies that focus on bridging the gaps in standards of care, access to emerging therapies, quality of life and support services and medical technologies.
Zoom webinar calendar of educational and networking events.
Strengthening and developing national and international collaborations with likeminded organisations with the same goal for our community and wider rare disease community.
Work to increase awareness and advocacy for early diagnosis and a national newborn screening program for Duchenne.
Focus on the collection and utilisation of robust data through the Australian Neuromuscular Disease Registry (ANMDR) and wider rare disease community through national and international collaborations, pertaining to patient experience data, HTA process, and the Australian perspective.
Work with government and strategic collaborations to gather patient experience evidence data to inform changes in practice and add to the knowledge.
Seek to develop new research opportunities in the areas of new therapies or advancing scientific knowledge and research in to therapeutic advancements, quality of life enhancing initiatives / standards of care and newborn screening for Duchenne.
Working with research institutions nationally and internationally to maximise research opportunities and advocate for increased research investments in Duchenne, dystrophinopathies and rare diseases.
Develop strategic alignments with national and international likeminded organisations to achieve our common goals for the community.
Advocate to State and Federal Government:
- By raising awareness of Duchenne and associated dystrophinopathies, and the lived
experience of the Australian community.
- Advocating for improved access to clinical trials,
- For a commitment to increase the funding for research into dystrophiopathies,
- For improved / timely processes for the community to access emerging therapies through the
HTA process and associated regulatory processes in Australia.
Working collaboratively in the National advocacy for all those living with Rare Diseases.
Advocating and working alongside industry to ensure all Australians have the latest information pertaining to clinical trials and emerging therapies, and information pertaining to the Australian perspective of Duchenne and associated dystrophinopathies.
To advocate for equitable access to best practice standards of care for all living with a dystrophinopathies across Australia.
To advocate for improved processes and equitable access to the National Disability Insurance Scheme (NDIS) for all those living with dystrophinopathies and their families / carers.
Catherine has qualifications in law and business management from the University of Western Australia (UWA). She was admitted to legal practice in WA in 1991. For most of her career, Catherine worked as a legal officer in State and Commonwealth departments practising mainly in criminal law, and also taught law at the Notre Dame University (NDU) and UWA. In addition to her legal work Catherine has held numerous voluntary roles on boards and committees including the Law Society of WA, NDU, Women Lawyers WA and several sporting organisations and governing bodies.
Catherine’s current role is as the Information Commissioner of Western Australia. Catherine has a family member who is affected by Duchenne.
Joseph is a Founder and Director of Duchenne Australia, bringing more than 15 years of diverse senior financial & operational management experience in professional services, training, construction and the resource industry.
As a Chartered Accountant and Financial Controller of a mental health provider, Joseph brings audit and compliance experience to his role as Chair and Treasurer of Duchenne Australia’s Board.
Joseph is married with 2 children and has a nephew with Duchenne.
Klair is a Founder and Director of Duchenne Australia and a qualified nurse and midwife with more than 27 years-experience in senior clinical / managerial health positions both in the UK and Australia.
Since 2007 Klair has worked tirelessly within the Duchenne community, both across Australia and through international collaborations. Klair has demonstrated skills across advocacy, patient registries, organisation management, improving community outcomes both through improved quality of life initiatives and accessing ‘best practice’ standards of care and also has demonstrated skills across research, clinical trials, industry and government relations, health economics, HTA and data collection.
Klair works as the Principal Midwifery Advisor for the WA Department of Health Chief Nursing and Midwifery Office.
Klair is married with 3 children. Her middle son Logan has Duchenne.
Michael is a Founder and Director of Duchenne Australia. He works in the mental health sector in WA and approaches the concept of support through a holistic lens that considers not just the physical and financial needs, but also the wellbeing and mental health care needs of those living with Duchenne and their families. Michael brings to Duchenne Australia a passion for Duchenne related research and for building support for the Duchenne community, connecting frequently to other patient organisations and community members both across Australia and globally.
Away from Duchenne Australia, Michael is an avid fisherman and camper, Michael is married with 3 children, his eldest son Harry has Duchenne.
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