ABOUT US
Our purpose:
Our primary purpose is to support the medical community work towards a better understanding of Idiopathic Hypersomnia, better access to effective treatment options, and identifying biomarkers that will lead to more appropriate diagnostic tools and ultimately a cure for Idiopathic Hypersomnia. We are committed to being a strong advocate, raising awareness and educating others about Idiopathic Hypersomnia. Our goal is to not just change the process to diagnosis but also the level of care and services available to people post diagnosis.
What we do:
-
Maintain a registry of people diagnosed with Idiopathic Hypersomnia that is used with permission for aiding research and education. This is the only patient database in Australia of people diagnosed with Idiopathic Hypersomnia. If you have been diagnosed with Idiopathic Hypersomnia in Australia you can help us keep this record up date by completing our patient survey
-
Help to improve the level of education with regards to Idiopathic Hypersomnia within the medical community.
-
Increase public awareness and education of Idiopathic Hypersomnia.
-
Advocate for the interests of people with Idiopathic Hypersomnia.
-
Provide support and information to people with Idiopathic Hypersomnia and their family and friends.
-
Provide information, referrals and advocate for better management of associated disorders of hypersomnolence.
-
Provide information and support for clinical trials, research and policy matters.
HA's Director Michelle Chadwick participates as a consumer health advocate and patient representative on clinical trial networks and other health related committees. -
Provide public and private sleep clinics and sleep specialists information brochures for patients and the public.
-
Host and promote the annual Worldwide Idiopathic Hypersomnia Awareness Week.
-
Participation in awareness initiatives including World Sleep Day, Rare Disease Day and other relevant awareness events.
-
Our website is kept up to date with relevant information including a news blog that people can subscribe to.
-
Social Media channels including Facebook , Twitter , Instagram
Organisation Overview:
Hypersomnolence Australia (HA) is a registered non-profit charitable organisation that relies on donations and fundraising to help fund our basic programs. No fees for membership are currently charged. Our small staff work on an unpaid volunteer basis. HA provides support and information to medical professionals and people diagnosed with Idiopathic Hypersomnia as well as their family and friends. We also assist people who suspect that they may have Idiopathic Hypersomnia or Narcolepsy find the right medical professionals so that they can receive proper treatment including appropriate testing and correct diagnosis.
Hypersomnolence Australia was initially established to exclusively support Idiopathic Hypersomnia however we have come to realise that not everyone diagnosed with Idiopathic Hypersomnia actually has Idiopathic Hypersomnia. We also know that there are people that may have Idiopathic Hypersomnia but who also have other problems (that they may or may not be aware of) that make managing their Idiopathic Hypersomnia symptoms much more difficult.
We have many people from all over the world contact us that are desperate for help. We have helped a number of them find a more appropriate cause/reason for their symptoms. Some of these people have even had a complete resolution of their symptoms. So not everyone that comes to HA has Idiopathic Hypersomnia however many of them find their way to HA because there really isn’t a lot out there for people that experience excessive daytime sleepiness and hypersomnia.
We are concerned with the standard of care that we see people with excessive daytime sleepiness and hypersomnolence receive so while our primary goal is to change the prognosis for people suffering from idiopathic hypersomnia we are also determined to see improvements made with regard to the diagnosis, treatment, and care of people who suffer from all forms of excessive daytime sleepiness and hypersomnolence, regardless of the cause.
Hypersomnolence Australia's director, Michelle Chadwick is also Chairperson of Australia's peak patient body for sleep disorder's Sleep Disorders Australia (SDA) so we work closely with SDA to provide support and information to not just people with Idiopathic Hypersomnia, but also to people with Narcolepsy, Sleep Apnea and other causes of excessive daytime sleepiness and hypersomnolence.
If you are a radio station looking for a community service announcement please feel free to use ours. If you do use it please let us know at
info@hypersomnolenceaustralia.org.au so that we can give your radio station a shout out on our social media to say thanks.