The support that is available to sufferers of Hypersomnia varies greatly from country to country. Below are links to various places you can seek support.
Living With Hypersomnia Forums
This is a forum devoted to those suffering from Idiopathic Hypersomnia. Membership is free and it is a terrific place to discuss your diagnosis, how you are finding different treatments and the other nuances of Idiopathic Hypersomnia:
» Visit the Living With Hypersomnia Forums
Idiopathic Hypersomnia Facebook Group
This is a private Facebook Group for those suffering from Major Somnolence Disorder (Previously known as Idiopathic Hypersomnia). Membership is free and it has members from countries around the world including the United States, Europe, Africa and Australia. The discussions are primarily in English and it requires a free Facebook account to join:
» Request to join the Facebook Group
Idiopathic Hypersomnia – Australia Facebook Group
This is a private Facebook Group for sufferers of Idiopathic Hypersomnia in Australia. A much smaller group but a great place to discuss the specifics of IH in Australia. Whether there are questions about Medicare, ponderings about Centrelink support or you’re just wanting to touch base with someone on a more similar time zone – this is the place to do it! Members from outside Australia are welcome too, especially neighboring countries like New Zealand and South East Asia. Just follow this link to join the group:
» Visit the Idiopathic Hypersomnia – Australia Facebook Group
Narcolepsy and Overwhelming Daytime Sleep Society of Australia (NODSS)
NODSS is a support group founded in 1986 to help people with sleep disorders. They tend to have more Narcoleptics as members and provide counseling and information to people with any sleep disorder. NODSS is staffed entirely by volunteers and offers paid membership.
» Visit the NODSS Website
Hypersomnie idiopathique – French Facebook Group
This is a private Facebook Group for sufferers of Idiopathic Hypersomnia in France. This group is run by a Neuroscientist who specialises in Idiopathic Hypersomnia. Follow this link to join the group:
» Visit the Hypersomnie idiopathique – French Facebook Group
HYPERSOMNIES.FR – The French Reference Site for Idiopathic Hypersomnia
Le site de référence de l’hypersomnie (hypersomnie idiopathique, narcolepsie). Ce site web est le fruit du travail de doctorat en neurosciences de Cyrille Vernet, lui-même atteint d’hypersomnie idiopathique.
» Visit HYPERSOMNIES.FR
(This is a public website for sufferers of Idiopathic Hypersomnia in France. This page is written and maintained by Dr Cyrille Vernet)
United States of America (USA)
Narcolepsy & Hypersomnia Support Group of the Greater Washington DC Area
This is a patient-organized and facilitated support group for people with narcolepsy, hypersomnia, and other sleep disorders which include the symptom of Excessive Daytime Sleepiness. Meetings are completely free.
» Visit their Facebook Page
Narcolepsy Network is a national patient support organization founded in 1986. It brings people with Narcolepsy together and fills a crucial role in a community of thousands. Becoming a member supports research, advocacy efforts, public awareness & education.
» Visit their Narcolepsy Network Website
Narcolepsy LA is a meetup group for People with Narcolepsy (with or without Cataplexy) who live in or around the greater Los Angeles area. People diagnosed with Hypersomnia are also welcome.
» Visit their Meetup Page
The Midwest Narcolepsy Support Group
The Midwest Narcolepsy Support Group is an organization whose mission is helping people with Narcolepsy and idiopathic hypersomnia function better in their everyday lives. They meet once a month and their meeting schedule is posted on their website. They also have a toll-free conference number so you can join their discussions even if you are unable to make it to the meetings in person.
» Visit The Midwest Narcolpesy Support Group website
Other Support Resources?
If you are aware of other resources for Hypersomniacs that should be on this page then please email our webmaster, Lloyd at [email protected]. Please include a short description of how they can help including their website address, name, phone number and/or email address so those interested can contact them directly.
This post is also available in: French