Hypersomnolence Australia

Idiopathic Hypersomnia & Narcolepsy Resources. Our resources bring together reliable information, practical guidance, and lived-experience perspectives for people living with idiopathic hypersomnia and narcolepsy, & those who support them. Resource hub: hypersomnolenceaustralia.org.au/resources

Diagnosis to Aftercare. A practical resource for treating doctors of individuals with #IdiopathicHypersomnia and #Narcolepsy, with a strong focus on patient support, communication, and medication management. hypersomnolenceaustralia.org.au/single-post/di…

The next Living with Idiopathic Hypersomnia Catch-Up 📅 Wednesday 20 May - TOMORROW! ⏰ 6:30pm AEST Our community groups offer a friendly, safe and supportive space to share your experiences and challenges with others who understand. More info: 🔗 hypersomnolenceaustralia.org.au/supportgroup

Narcolepsy Type 1 - Treatment Update The TGA has now granted both Orphan Drug designation & Priority Review status for Takeda’s oveporexton for NT1 in Australia. It is exciting to see movement within the Aust regulatory system.

Idiopathic Hypersomnia Day (IH Day) – 13 June 2026 This year’s theme: Where in the World is Idiopathic Hypersomnia? Join the campaign: shorturl.at/MByHP For more information about IH Day, and graphics to share, visit: hypersomnolenceaustralia.org.au/ihday

🔔 New research: Sleep regulation is disrupted in Idiopathic Hypersomnia A new study in SLEEP provides evidence to support bringing back the distinction between IH with and without long sleep rather than treating IH as one single condition. academic.oup.com/sleep/advance-…

Researchers from The University of Queensland are currently recruiting people with narcolepsy and idiopathic hypersomnia to take part in co-design workshops. If you’re interested, you can read more and complete an expression of interest form here: uniofqueensland.syd1.qualtrics.com/jfe/form/SV_bP…

Announcing the Illuminate Brain Fog initiative! Share your experiences with brain fog through a series of short, personalized surveys. Your input will help improve research & clinical care for those living with narcolepsy & idiopathic hypersomnia - #QUESTIONNAIRE" target="_blank" rel="nofollow noopener">sleepconsortium.org/illuminate-bra…

Building a Global IH Community: Michelle Chadwick on Advocacy, Awareness & Australia’s challenges youtu.be/GruDD-9oI44?si… #IdiopathicHypersomnia

We are also interested in hearing from anyone in Australia who has been prescribed sodium oxybate (any brand) but is having difficulty accessing it. If you feel comfortable you can share your access experience in the comments or via email at info@hypersomnolenceaustralia.org.au

If you’ve noticed any changes, including reduced effectiveness or new side effects - please share your experience. forms.gle/znS8oEP4pwgef8… This information is critical to understanding what’s happening in the real world and strengthening advocacy for safe and effective access.

After 13 years, Idiopathic Hypersomnia Awareness Week (2013–2025) is concluding. What began as a small community-led initiative became a global awareness effort. Thank you to everyone who helped grow this movement. Michelle Chadwick Advocacy & Awareness continues!

The next Living with Narcolepsy Catch-Up 📅 Wednesday 4 March ⏰ 6:30pm AEST 👉 Register here (one-time only): forms.gle/wzhsYSqE92LxVX… Questions? Email us: info@hypersomnolenceaustralia.org.au More info about our Living with Narcolepsy community group hypersomnolenceaustralia.org.au/supportgroup

This isn’t breaking news for those living with Idiopathic Hypersomnia. But it is encouraging to see researchers acknowledge that awareness and appreciation of the full 24-hour nature of IH is lacking within the medical community. link.springer.com/article/10.100…

We’re preparing for an upcoming narcolepsy research project. If you have NT1 and would like to hear more once screening begins, register your interest here: forms.gle/GjrduCAACH6MJD… 👉 No commitment required This is simply so we can contact you when the project moves forward

The next Living with Idiopathic Hypersomnia Catch-Up 📅 Wednesday 21 January 🕡 6:30pm AEST 👉 Register here (one-time only): forms.gle/VW8bovVTMsDaYi… Any questions email: info@hypersomnolenceaustralia.org.au More info: hypersomnolenceaustralia.org.au/supportgroup

Want to improve your quality of life but don’t know where to start? This article explores realistic ways to think about wellbeing that are compassionate, achievable & grounded in lived experience - not unrealistic expectations or “push harder” advice. hypersomnolenceaustralia.org.au/single-post/ho…

Volunteers required VIBRANCE-3: Orexin Agonist Study for Idiopathic Hypersomnia MELBOURNE: trials.mlsi.org.au/trials/alks for more info, or contact: respiratorymedicine.trials@monashhealth.org ADELAIDE: Contact Alison Teare alison.teare@flinders.edu.au OR aish.sleeplab@flinders.edu.au

Alkermes has announced positive topline results from the Vibrance-2 phase 2 study evaluating alixorexton in patients with narcolepsy type 2 (NT2). Learn more: investor.alkermes.com/news-releases/…

💬 Have you experienced side effects or reduce effectiveness with the generic sodium oxybate? 👉 If you’ve noticed any side effects or how the generic sodium oxybate works for you, please complete our short feedback form. Aussies only 🔗 forms.gle/znS8oEP4pwgef8…