Let’s Get
#Beyond
The Hypersomnia Foundation is committed to improving
the lives of people living with idiopathic hypersomnia (IH)
and related sleep disorders.
What Is Idiopathic Hypersomnia?
Idiopathic Hypersomnia (IH) is a chronic neurological sleep disorder, causing excessive daytime sleepiness despite adequate, or more typically, long sleep amounts (more than 9-10 hours in a 24-hour period). People with IH often struggle to wake, despite setting multiple alarms, and have difficulty rising from bed (called sleep inertia). They may start the day feeling extremely groggy (sometimes referred to as sleep drunk), and can experience significantly reduced focus and concentration during waking hours (called brain fog).
People suffering from idiopathic hypersomnia often live without a correct diagnosis for a long time, blaming themselves and struggling to maintain work, studies and relationships.
Living With IH
Newly Diagnosed
“I’ve just been diagnosed with idiopathic hypersomnia. What does this mean?”
The Hypersomnia Foundation has compiled FIVE THINGS FOR YOU TO KNOW to give you the information and resources you need to help you take the first steps forward in understanding and coping with your new diagnosis.
Patients & Supporters
The Hypersomnia Foundation is here to support people with hypersomnias, their families and their supporters. HF has compiled and created many free resources, such as informational brochures and educational tools, to help with aspects of your daily lives that are affected by living with a hypersomnia or supporting someone who does.
Treating IH
Healthcare Providers
The Hypersomnia Foundation provides numerous free resources for healthcare professionals and educators, including patient materials, listing in our provider directory, links to clinical trials and much more…
Researchers/Pharma
The Hypersomnia Foundation supports researchers and pharmaceutical companies working toward improving the lives of people with IH and related hypersomnias. Find out about our research award program, our international patient registry and much more….
News
December 15, 2020
Autonomic Dysfunction and Idiopathic Hypersomnia Study Produces Results
A recurring theme we see from people with idiopathic hypersomnia is an interest in finding others who share symptoms beyond sleepiness. This helps connect patients with common experiences and... read >
December 15, 2020
YOU Can Get Us #BeyondSleepy! Help Us Raise $24,000 by December 31st!
The work of any rare disease organization naturally relies on community support, and this year—more than ever—you can help determine what the Hypersomnia Foundation can accomplish in 2021... read >
December 15, 2020
In Case You Missed It! – December 2020
Happy Holidays! Celebrations may look different this year, so however you plan to enjoy the season, we wish you peace and joy! If you’ve missed any of the latest news we’ve shared via... read >
HF Twitter Feed
@HypersomniaNews #BeyondSleepy
Join us on January 30 @ 1:00 p.m. ET for our FREE virtual event - YOUR BEST SELF: New Ways of Thinking About Disabi… https://t.co/7XRumigp7m
2 days ago
Excited to have Anjel Burgess and Diana Kimmel speak at our Jan 30 virtual event: 𝒀𝒐𝒖𝒓 𝑩𝒆𝒔𝒕 𝑺𝒆𝒍𝒇: 𝑵𝒆𝒘 𝑾𝒂𝒚𝒔 𝒐𝒇 𝑻𝒉𝒊𝒏𝒌… https://t.co/l2mtLw91b9
4 days ago
Be a voice for rare disease! Register for #RareAcrossAmerica. Meet virtually with Senators and Representatives, sha… https://t.co/n3CAms2Fe2
5 days ago
Join the Colorado #Narcolepsy and #IH #SupportGroup on Jan 11 @ 6:30PM (MST) for a virtual discussion with the supp… https://t.co/JzPU25M9vo
1 week ago
Events
Saturday, January 30, 2021
VIRTUAL: Your Best Self—New Ways of Thinking About Disability & Support
Saturday, June 12 - Wednesday, June 16, 2021
SEATTLE: APSS SLEEP 2021 (a conference for sleep medicine professionals)
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