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 & Exercise

Are you 18+, and live in Australia with a confirmed IH diagnosis?

This national survey explores how people with IH experience physical activity and exercise, an area that has been largely understudied.

Survey link: https://t.co/ojV4scmsUk

[Hypersomnolence Australia @Hyper_Sleep]

@Noam1969 @Woolcockmedical The Alkermes Brilliance Studies program is a clinical research project evaluating the safety and efficacy of an investigational oral drug called alixorexton for treating narcolepsy type 1 and narcolepsy type 2. They also have a program with the same drug for IH called Vibrance.

[Hypersomnolence Australia @Hyper_Sleep]

Researchers at the @Woolcockmedical are running 3 trials and they are looking for people with narcolepsy type 1 & 2.

Travel cost reimbursement may be possible for those outside of Sydney.

Pls reach out to researchers for more information. Email [email protected]

[Hypersomnolence Australia @Hyper_Sleep]

We really need to improve treatment options for people living with narcolepsy in Australia.

Please share the links with anyone in your narcolepsy networks who may be eligible.

Survey 1.
https://t.co/WMSuNUCqGY

and

Survey 2.
https://t.co/ONXsgb1W75

[Hypersomnolence Australia @Hyper_Sleep]

This is an exciting news for our narcolepsy friends in the USA! FDA announcement:
https://t.co/10oT1VCuss

If you are an Aussie with NT1 pls consider doing these surveys. It will help support getting this medication in Aust.

https://t.co/WMSuNUCqGY

&

https://t.co/ONXsgb1W75

[Hypersomnolence Australia @Hyper_Sleep]

Narcolepsy type 1 - you are invited to complete a short anonymous online survey.

The findings will help inform a report on the broader impact of NT1 and may contribute to future advocacy and treatment access initiatives. https://t.co/ONXsgb1W75

[Hypersomnolence Australia @Hyper_Sleep]

Takeda has announced that China has become the first country in the world to approve ORZEYFUL® (oveporexton) for the treatment of narcolepsy type 1 (NT1) in adolescents aged 16 years and older and adults.

Takeda’s announcement:
https://t.co/ksslgvslY2

[Hypersomnolence Australia @Hyper_Sleep]

Sodium oxybate has now been approved by the TGA for the treatment of narcolepsy in Australia. If you have narcolepsy and would like to know whether sodium oxybate may be an appropriate treatment option for you, speak with your doctor. https://t.co/xSbOGpHafu

[Hypersomnolence Australia @Hyper_Sleep]

Modafinil/Armodafinil, birth control and pregnancy.

Our article explains what is currently known, why these warnings exist, and why awareness matters.

Read more here:
https://t.co/XX6jLSw9TD

[Hypersomnolence Australia @Hyper_Sleep]

“Why is my Dex not working?”

One day your medication seems to work — and the next it feels like it’s doing nothing at all.

Our article explores some of the reasons this may be the case:
https://t.co/T9H6IS00TV

#IdiopathicHypersomnia #Narcolepsy #Dexamphetamine #Vyvanse

[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]

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

[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