top of page

Resources​

Explore reliable information, practical guidance, and lived-experience perspectives designed to help people living with Idiopathic Hypersomnia and Narcolepsy — and those who support them.

QUICK LINKS

Idiopathic Hypersomnia factsheet

Narcolepsy factsheet

Medically reviewed factsheets providing clear, practical overviews of idiopathic hypersomnia and narcolepsy.

Understanding the Broader Impact of IH

A deeper look at how Idiopathic Hypersomnia can affect cognition, daily functioning, independence, education, employment, relationships, and quality of life.

Understanding the Biology of IH

Exploring research into the biological mechanisms that may underlie Idiopathic Hypersomnia.

DARE-PX: Patient Experience Registry

Launching in 2026

 

Contribute your lived experience to Australia’s first national registry for Central Disorders of Hypersomnolence (CDH) including, Idiopathic Hypersomnia, Narcolepsy, and KLS. Your insights will help improve diagnosis, services, and long-term outcomes.

dare.png

LIVING WELL

Life After Diagnosis
Live your best life

A 3 part series on improving overall health and wellbeing and how that can have a positive impact on managing symptoms.

Top Tips for Living with Hypersomnia

Practical advice for people
living with idiopathic hypersomnia or narcolepsy, and for the healthcare professionals who support them.

Electrolytes & Dehydration

Learn how  dehydration and electrolyte imbalances can make hypersomnia symptoms worse or more difficult to manage - and how to avoid it.

MEDICATIONS & TREATMENTS

Dexamphetamine – Why is my dex not working?
 

Explore the reasons amphetamine-based medications may stop working as expected, including how tolerance, diet, and timing can affect how your medication is absorbed.

Modafinil & Armodafinil –
Birth Control & Pregnancy

Did you know that Modafinil & Armodafinil can reduce the effectiveness of hormonal contraceptives?

Sodium Oxybate – Access in Australia 

How to access Sodium Oxybate in Australia, and why this medication is not TGA registered (approved) or PBS listed.

CONNECTION & COMMUNITY

Living with Idiopathic Hypersomnia & Living with Narcolepsy Community Groups

Our community groups bring people together to share conversation, connection, and lived experience. These groups offer a friendly environment where individuals can talk about their daily challenges, exchange ideas, and hear how others navigate life with their condition.

Idiopathic Hypersomnia Day

IH Day is a global awareness day focused on increasing understanding of Idiopathic Hypersomnia and its impact on daily life.

Learn about IH Day

Lived Experience - Stories and Perspectives

Read personal stories from people navigating life with idiopathic hypersomnia and narcolepsy.

Living with Idiopathic Hypersomnia

Living with Narcolepsy

CLINICAL GUIDANCE

Diagnosis to Aftercare

Guidance for health professionals supporting individuals with narcolepsy and idiopathic hypersomnia including diagnosis, patient support, and medication management.

Daytime Sleepiness – Finding the Cause

The possible causes of excessive daytime sleepiness span virtually every area of medicine. To assist patients and doctors, we’ve compiled a list of known causes and the routine tests used to investigate them.

Sleep Drunkenness / Sleep Inertia

This resource explains what makes waking up uniquely difficult in idiopathic hypersomnia.

Multiple Sleep Latency Test (MSLT)

What the MSLT measures, how the test works, and the important limitations to be aware of when using it to diagnose sleep disorders.

Epworth Sleepiness Scale (ESS)

A simple questionnaire commonly used to assess levels of daytime sleepiness.

Cataplexy –
What it is, and what it isn't

Resource in development

VIDEO LIBRARY

Presentations & Webinars

Watch a collection of webinars, and expert presentations on our YouTube channel.

bottom of page