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The Hypersomnia Foundation has named Rebecca King, who is both a person with IH and an HF volunteer, as a Legislative Advocate. In this role, Rebecca will be leading HF efforts to assess the legislative landscape, select the issues and bills with the greatest potential...
Continue ReadingIn this month’s “In Case You Missed It!”, keep up to date with news we’ve shared with the sleep disorder community via social media this past month. So don’t worry if you’ve missed anything – we’ve got you covered! CHECK OUT THE UPDATED DETAILS OF OUR...
Continue ReadingKeep up to date with all the news we’ve shared with the sleep disorder community in this month’s “In Case You Missed It!” TAKE ACTION by clicking to support NORD’s advocacy. Read about a runner with IH competing in the upcoming Boston Marathon. If you...
Continue ReadingHave IH, narcolepsy, or a related sleep disorder? Ever wonder how you can help in the search for better treatments or even a cure? Now is your chance – a number of research studies are currently seeking participants who have IH, narcolepsy, or excessive daytime...
Continue ReadingNeed information relating to your IH? Love things that are FREE? Our Hypersomnia Foundation website is full of FREE resources for individuals with IH and related sleep disorders (and their loved ones). Our website offers an “IH Standard Characteristics” document you can share with your...
Continue ReadingAre you satisfied with your health insurance benefits? Or are you pulling your hair out over complicated policy language, undecipherable diagnostic codes, and denials of coverage for your IH treatments? It is difficult enough to have a rare disease such as IH and try to manage...
Continue ReadingYou’ve participated, and NOW THERE ARE RESULTS! Our hypersomnia-specific patient registry, which was established at CoRDS (Coordination for Rare Diseases at Sanford) in 2016 and which has grown to nearly 1,500 participants, has already helped researchers in their efforts to unlock the mysteries of rare sleep...
Continue ReadingHappy 2019! As we welcome the new year, we at the Hypersomnia Foundation have resolved to make things easier for our followers! In this month’s “In Case You Missed It!,” we highlight some of the most important news and social media posts about the HF,...
Continue ReadingThe Hypersomnia Foundation is pleased to announce that we have created a Medical Alert Card, designed expressly for people with idiopathic hypersomnia (IH). The card is FREE and can be downloaded from our website HERE. Our Medical Alert Card is designed to both (1) allow a...
Continue ReadingWe’re pleased to announce that we have updated our Research Studies web page (formerly titled Clinical Trials). By CLICKING HERE, you can see our latest information on ongoing research studies about idiopathic hypersomnia (IH) and related disorders, results from past research studies (in which you...
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