ABOUT US
OUR MISSION​​
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Our mission is to turn awareness into action - improving diagnosis, treatment, and quality of life for people living with Central Disorders of Hypersomnolence (CDoH), including Idiopathic Hypersomnia, Narcolepsy.
OUR VISION
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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 every person with CDoH.
WHAT WE DO
Advocacy – We represent lived experience in national conversations on sleep health, medicines access, and research priorities, ensuring Central Disorders of Hypersomnolence (CDoH) 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 national registry developed in collaboration with clinicians and researchers, to include all CDoH. 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 CDoH. This ensures people living with these conditions receive more accurate diagnoses and improved care.
Community & Events – We connect and represent people living with CDoH 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 receive the right tests, the right diagnosis, and the right support.​
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. The aim was to raise public awareness and establish a credible, evidence-based source of information about Idiopathic Hypersomnia.
Recognising the Gap
Only after beginning this work did the full extent of the gap become clear. There were no researchers and, few clinicians in Australia with any real interest in IH. If the scale of the problem had been known from the outset, it would have been clear that addressing it would require a sustained, coordinated effort across the health and research sectors, a reality that would have been overwhelming given the limited resources available at the time. But by then, the need was undeniable.
Including all Central Disorders of Hypersomnolence
In those early years, the work quickly evolved from basic awareness-raising to correcting widespread misconceptions and knowledge gaps across both the medical community and the general public. Over time, it became clear that the barriers facing people with IH were shared across the broader group of Central Disorders of Hypersomnolence (CDoH), including Narcolepsy.
Today
Today, Hypersomnolence Australia is recognised nationally and internationally as a trusted voice in hypersomnolence advocacy, education, and research collaboration. 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 CDoH, including Idiopathic Hypersomnia and Narcolepsy.
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Looking ahead
Hypersomnolence Australia will accelerate our national patient-registry expansion, deepen partnerships across research and policy, and strive for a future where every person living with Idiopathic Hypersomnia or Narcolepsy receives timely diagnosis, personalised 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 led by Michelle Chadwick (Founder & Executive Director) with a network of volunteers, clinicians, researchers, and advisers.
We work nationally and share resources internationally, partnering wherever collaboration accelerates progress for people living with Central Disorders of Hypersomnolence, including Idiopathic Hypersomnia, 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 Registry – If you have been diagnosed with Idiopathic Hypersomnia, you can contribute your lived experience to improve research and care. We’ll share details soon about our expanded registry for all CDoH, including Narcolepsy and other related conditions.
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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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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 – For interviews, lived experience testimony, or consumer representation opportunities, please contact us.
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Donate – Help sustain the education, advocacy, and data initiatives that drive progress for people living with CDoH.
