About Us
“Finding your website is rather like discovering a member of an underground resistance that after months of not hearing my mother tongue, speaks the same language as me!”
— Alan Thompson
OUR MISSION
Our mission is to turn awareness into action - improving diagnosis, treatment, and quality of life for people living with Central Disorders of Hypersomnolence (CDH), including Idiopathic Hypersomnia and Narcolepsy.
OUR VISION
Our vision is to close the gap between limited understanding and meaningful action, ensuring that science, policy, and lived experience move forward together to improve outcomes for people living with CDH.
WHAT WE DO
Advocacy – We represent lived experience in national conversations on sleep health, medicines access, and research priorities, ensuring Central Disorders of Hypersomnolence (CDH) needs are visible and understood.
Research & Data – We maintain Australia’s only patient-generated data registry for Idiopathic Hypersomnia and are building a next-generation, REDCap-based Australian and New Zealand registry for all CDH, developed in collaboration with clinicians and researchers. Our registry illuminates real-world needs, supports ethical research, and informs policy.
Education – We produce evidence-based resources to help doctors and health care professionals better understand and manage CDH. This ensures people living with these conditions receive more accurate diagnoses and improved care.
Community & Events – We connect and represent people living with CDH through awareness campaigns, education days, and collaborations that amplify lived experience. Our global community reach helps ensure these conditions are recognised, researched, and better understood.
WHY IT MATTERS
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Central Disorders of Hypersomnolence are often misdiagnosed or mistaken for more common conditions, leading to delays in effective care.
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People live with persistent, debilitating sleepiness and related symptoms that profoundly disrupt study, work, relationships, and mental health, particularly when they lack adequate understanding or support.
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Improving data and education improves outcomes: when clinicians recognise patterns earlier and have up-to-date guidance, people are more likely to receive appropriate investigation, diagnosis and care.
OUR STORY
The Beginning (2013)
When Hypersomnolence Australia was founded in 2013, there was a complete absence of information, advocacy, or recognition for Idiopathic Hypersomnia (IH) in Australia. HA was established specifically to change that; to build awareness and understanding of IH, establish credible evidence-based information, and advocate for its recognition as a serious neurological sleep/wake disorder.
Recognising the Gap
As the work developed, the full extent of the gap became clear. There were no researchers in Australia focused on IH and few clinicians with any real interest in the disorder. With the expertise HA needed largely unavailable in Australia, we looked internationally, building relationships with leading IH researchers and drawing on decades of published research to strengthen understanding, education and advocacy in Australia.
Including all Central Disorders of Hypersomnolence
In those early years, it became clear that many of the barriers facing people with IH were also experienced by people with Narcolepsy. Our advocacy, education, research, and community work now spans both conditions.
Today
Today, Hypersomnolence Australia is Australia’s leading voice for people living with Idiopathic Hypersomnia and Narcolepsy, and is recognised nationally and internationally for its work in hypersomnolence advocacy, education and research. We work closely with clinicians, researchers, industry partners, and lived-experience advocates to improve patient outcomes, strengthen data systems, and influence policy. Our mission remains the same: to drive awareness, education, and research towards better outcomes for people living with CDH, including Idiopathic Hypersomnia and Narcolepsy.
Looking ahead
Looking ahead, Hypersomnolence Australia will continue to strengthen research and data through DARE-CDH, deepen partnerships across research and policy, and work towards a future where people living with Central Disorders of Hypersomnolence receive timely diagnosis, appropriate care and meaningful quality of life.
PARTNERS & COLLABORATORS
We’re grateful to the clinicians, researchers, advocates, and organisations who share our commitment to improving outcomes for people living with Central Disorders of Hypersomnolence. Through collaboration, we amplify progress in education, research, and awareness across Australia and internationally.
WHO WE ARE
Hypersomnolence Australia is a registered, not-for-profit Health Promotion Charity founded and led by Michelle Chadwick (Founder & Executive Director), supported by a dedicated team of volunteers and working collaboratively with clinicians, researchers and other stakeholders.
We work nationally and share resources internationally, partnering wherever collaboration accelerates progress for people living with Central Disorders of Hypersomnolence, including Idiopathic Hypersomnia and Narcolepsy. Our approach is ethics-minded, evidence-focused, and community-led, ensuring that lived experience informs every level of our work.
GET INVOLVED
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Join the DARE-CDH (Data Registry for Central Disorders of Hypersomnolence) Registry. Launching in 2026
Contribute your lived experience to Australia & New Zealand's registry for Central Disorders of Hypersomnolence (CDH), including Idiopathic Hypersomnia, Narcolepsy, and KLS. Your insights will help improve diagnosis, services, and long-term outcomes.
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Subscribe – Receive evidence-based updates, event announcements, and information about opportunities to contribute to research and community initiatives.
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Share Your Story - Your lived experience can help others feel less alone and deepen understanding of IH and Narcolepsy. You can share your story anonymously — every contribution helps raise awareness.
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Volunteer – Lend your skills in areas such as social media, content creation, and communications to help raise awareness and share credible information.
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Media & Representation – If you are interested in sharing your lived experience in interviews, speaking with journalists or policymakers, or contributing consumer testimony to research, reviews, or public inquiries, please contact us.
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Donate – Help sustain the education, advocacy, and data initiatives that drive progress for people living with CDH.
