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
November 30, 2021
Let’s Kick Off Giving Tuesday Together!
On this Giving Tuesday, as we reflect upon a year that has been challenging for all, we have much to be thankful for. We did not let the pandemic slow down or stop our progress. Instead, we... read >
November 30, 2021
In Case You Missed It! – November 2021
Happy Fall! If you’ve missed any of the latest news we’ve shared through our social media, don’t worry! Get up to date with this edition of “In Case You Missed It!” TWO GREAT... read >
October 29, 2021
Diagnosing Hypersomnias: The Blood Hypocretin Mystery
The current gold standard diagnostic test to differentiate narcolepsy type 1 (NT1) from other hypersomnias is to measure the level of hypocretin in cerebrospinal fluid (CSF). The... read >
HF Twitter Feed
@HypersomniaNews #BeyondSleepy
ADVOCACY ALERT! We need your help to keep paid family and medical leave in the Build Back Better Act
Contact your… https://t.co/Ov0EcUXgfd
13 hours ago
IH CLINICAL TRIAL - @HarmonyBio announced today that the @US_FDA accepted an IND application for pitolisant for the… https://t.co/qgTYAfFivQ
2 days ago
THANK YOU for supporting HF on #GivingTuesday 𝙒𝙚 𝙘𝙖𝙣’𝙩 𝙙𝙤 𝙩𝙝𝙞𝙨 𝙬𝙞𝙩𝙝𝙤𝙪𝙩 𝙔𝙊𝙐 ! Your donation helps improve the lives… https://t.co/iQXzEn3pL2
3 days ago
Be a part of #GivingTuesday and support the Hypersomnia Foundation!Donations support our annual research award, pat… https://t.co/itnsVdLc68
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Events
Friday, March 11 - Wednesday, March 16, 2022
ROME: World Sleep 2022 (a conference for sleep medicine professionals)
Saturday, June 4 - Wednesday, June 8, 2022
CHARLOTTE: APSS SLEEP 2022 (a conference for sleep medicine professionals)
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