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ABOUT US

Our purpose:

Our primary purpose is to support the medical community in enhancing their understanding of Idiopathic Hypersomnia, including improved access to effective treatments and the identification of biomarkers that could lead to more accurate diagnostic tools and, ultimately, a cure. Additionally, we are dedicated to being a strong advocate and to raising awareness and educating others about Idiopathic Hypersomnia and Narcolepsy. Our goal is to not just change the process of diagnosis but also to improve 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. Read more about our patient registry and privacy policy.
     

  • Help to improve the level of education with regard to Idiopathic Hypersomnia and within the medical community.
     

  • Increase public awareness and education about 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 , X (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 team works on an unpaid volunteer basis. HA provides support and information to medical professionals and people diagnosed with Idiopathic Hypersomnia and Narcolepsy 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 a correct diagnosis.
 

Hypersomnolence Australia was founded with a strong focus on Idiopathic Hypersomnia (IH). However, as our understanding of sleep disorders has grown, we recognise that some IH diagnoses may be different conditions. We also know that there are people who may have IH but who also have other health problems (that they may or may not be aware of) that make managing their IH symptoms much more difficult.


We have many people from all over the world who contact us desperate for help. We have helped a number of them find a more appropriate cause for their symptoms. Some of these people have even had a complete resolution of their symptoms. So not everyone that reaches out has IH; however, many of them find their way to us because there really isn’t a lot out there for people that experience excessive daytime sleepiness and hypersomnia.

 

Hypersomnolence Australia is concerned about the current standard of care for those experiencing excessive daytime sleepiness and hypersomnia. While improving the prognosis for Idiopathic Hypersomnia (IH) remains our core mission, we are also fiercely committed to advocating for better diagnosis, treatment, and overall care for all individuals with disorders of hypersomnolence, regardless of the underlying 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.

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