Hypersomnolence Australia

Driving awareness, education & research to improve outcomes for people living with Idiopathic Hypersomnia & Narcolepsy.
Non profit ~ Lived Experience Led

[Hypersomnolence Australia @Hyper_Sleep]

Idiopathic Hypersomnia Day – 13 June 2026.
More information visit:
https://t.co/shMKQfzdyt

[Consumers Health Forum of Australia @CHFofAustralia]

CHF welcomes @Hyper_Sleep as a new Associate Member. Working to improve the lives of those living with complex neurological sleep-wake disorders including idiopathic hypersomnia and narcolepsy.

To know more about becoming a CHF Member, visit our webpage: https://t.co/XU9ZegWc2c

[Hypersomnolence Australia @Hyper_Sleep]

Top Tips for Living with Hypersomnia #narcolepsy #IdiopathicHypersomnia

https://t.co/ujbHqx3VvQ

[Hypersomnolence Australia @Hyper_Sleep]

Idiopathic Hypersomnia is more than just sleepiness. Many people living with IH experience significant cognitive dysfunction (“brain fog”), problems with memory/concentration, slowed thinking, confusion and much more >
https://t.co/hyQxtEL440

[Hypersomnolence Australia @Hyper_Sleep]

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.

https://t.co/wfdYXIHHpx

[Hypersomnolence Australia @Hyper_Sleep]

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:
🔗 https://t.co/0HxZ7KiRHh

[Hypersomnolence Australia @Hyper_Sleep]

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.

[Hypersomnolence Australia @Hyper_Sleep]

Idiopathic Hypersomnia Day (IH Day) – 13 June 2026

This year’s theme: Where in the World is Idiopathic Hypersomnia?

Join the campaign: https://t.co/IDRgDa71if

For more information about IH Day, and graphics to share, visit:
https://t.co/shMKQfzdyt

[Hypersomnolence Australia @Hyper_Sleep]

🔔 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.
https://t.co/mzMuvIbQJA

[Hypersomnolence Australia @Hyper_Sleep]

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: https://t.co/bJTixecdbv

[Hypersomnolence Australia @Hyper_Sleep]

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 - https://t.co/fAGMZ7DYsR

[Hypersomnolence Australia @Hyper_Sleep]

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:
https://t.co/D3mbT2yzVv

[Hypersomnolence Australia @Hyper_Sleep]

Building a Global IH Community: Michelle Chadwick on Advocacy, Awareness & Australia’s challenges https://t.co/qHdWfQRlY7

#IdiopathicHypersomnia

[Hypersomnolence Australia @Hyper_Sleep]

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 [email protected]

[Hypersomnolence Australia @Hyper_Sleep]

If you’ve noticed any changes, including reduced effectiveness or new side effects - please share your experience.

https://t.co/pCOBdY4Xlw

This information is critical to understanding what’s happening in the real world and strengthening advocacy for safe and effective access.

[Hypersomnolence Australia @Hyper_Sleep]

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!

[Hypersomnolence Australia @Hyper_Sleep]

The next Living with Narcolepsy Catch-Up
📅 Wednesday 4 March
⏰ 6:30pm AEST

👉 Register here (one-time only):
https://t.co/W43Bq1lUk9

Questions? Email us:
[email protected]

More info about our Living with Narcolepsy community group
https://t.co/0HxZ7KiRHh

[Hypersomnolence Australia @Hyper_Sleep]

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.

https://t.co/3phZBYMQ6u

[Hypersomnolence Australia @Hyper_Sleep]

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: https://t.co/foDMPsog8e

👉 No commitment required
This is simply so we can contact you when the project moves forward

[Hypersomnolence Australia @Hyper_Sleep]

The next Living with Idiopathic Hypersomnia Catch-Up

📅 Wednesday 21 January
🕡 6:30pm AEST

👉 Register here (one-time only):
https://t.co/ikBZzXZyeE

Any questions email: [email protected]

More info:
https://t.co/0HxZ7KijRJ