Rare Disease Day 2019 is an opportunity to be part of a global call on policy makers, healthcare professionals, and care services to better

On the 6 October we shared a video on our social media of Dr. David Rye’s presentation at the 2018 Hypersomnia Foundation Conference. If you missed it you can view it here Dr Rye spoke of the progress on many fronts including awareness, diagnostics and causes. He highlighted the increased attention at international sleep conferences including the World Sleep Congress 2017 where there was a very well attended symposium on Idiopathic Hypersomnia. Prof Karel Sonka used my Idiopa

The #IHAW2018 was another huge success! We reached hundreds of thousands of people across various social media platforms, our website and through print media and also radio. Thank you to everyone that interacted with (ie: shared, liked and commented) our posts. And a special thank you to those of you that went above and beyond to show your support. It doesn’t go unnoticed so I apologise if I don’t mention you here. Thank you to this year’s ambassadors and to our five genero

Update in this research below. Idiopathic hypersomnia (IH) is a poorly understood disorder, characterised by excessive sleep and daytime sleepiness. It has a severe impact on quality of life. An article published in the Sleep Research Society’s journal, SLEEP reports the first neuroimaging study of Idiopathic Hypersomnia, showing altered brain perfusion in regions modulating sleep-wake states. “These preliminary findings suggest that idiopathic hypersomnia is characterized b

Understanding how a chronic illness affects someone is difficult for anyone that doesn't experience it so for the 2018 Idiopathic Hypersomnia Awareness Week® we wanted to do our best to show people what living with IH is like through the thoughts and stories of people living with Idiopathic Hypersomnia. Idiopathic Hypersomnia tired is not normal people tired. "To start with when normal people are tired it’s generally because they are sleep deprived or their sleep quality is

MEDIA RELEASE For immediate release 1 August 2018 6th annual international Idiopathic Hypersomnia Awareness Week® runs from 3th through to 9th September. Idiopathic Hypersomnia (IH), sometimes referred to as Idiopathic Hypersomnolence, is a neurological sleep/wake disorder characterised by excessive sleep and daytime sleepiness. Most people can feel tired, fatigued and at times, excessively sleepy, particularly when they do not get enough sleep. However what sets people with

We are pleased to introduce the 2018 Idiopathic Hypersomnia Awareness Week® Ambassadors. We are fortunate to again have representatives from a few different countries. They bring to the role a range of perspectives and experience. Let's meet them! Susanna Barber Northumberland, UK Susanna has a love of people and animals. She has spent many years working with horses in roles that include grooming, a jockey, event rider as well as a yard manager. Sadly, due to IH she has had t

Have you or someone you know been diagnosed with Idiopathic Hypersomnia (sometimes referred to as Idiopathic Hypersomnolence)? Are you finding it difficult to understand or having trouble explaining it to others? Or are you a medical professional looking for a good quality resource for your patients? Hypersomnolence Australia (HA) has produced an information brochure for Idiopathic Hypersomnia. Our brochure was written by HA's director Michelle Chadwick and has been vetted a

Hypersomnolence Australia holds the only patient registry of people diagnosed with Idiopathic Hypersomnia in Australia. It is used for the purpose of aiding research and and to assist us to identify key areas of concern that need addressing. It also gives you the opportunity to tell us what your biggest concerns are, the hurdles you face or issues you think need attention.The survey is only 28 questions and should take no more than about 15 minutes to do. Note: as relevant or

Every year we say we have come a long way and I'm proud to say this year has been no different. I never expected HA to make the impact it has in such a short time. Some things have taken a little longer to achieve than others but we have come to appreciate that all organisations need time to grow and that with time comes experience and knowledge. So What's New? We are so excited to have a brochure for Idiopathic Hypersomnia (IH). Our brochure was written by me however it w