Patients & Supporters

The Hypersomnia Foundation has created and compiled many free resources and educational tools to help you cope with the day-to-day challenges of living with a hypersomnia. Families, significant others and friends will find helpful information here, too.

Learn About IH and Related Sleep Disorders

Idiopathic Hypersomnia & Related Disorders. Learn the basics about IH, narcolepsy, Kleine-Levin syndrome, and more.
IH Summary. Download and share HF’s handout detailing the characteristics & diagnostic criteria of IH.
HF’s Brochure. Download and share to help improve awareness of HF and hypersomnias (available in Deutsche; English; Español; Français).
Treatment. A detailed review of current and upcoming treatment options by our Medical Advisory Board. Also see Parenthood & Pregnancy and Birth Control, Menstruation & Menopause.
Tips for Supporters. Check out and share our helpful tips from people who have hypersomnias and their supporters.
Personal Journey Stories. Read about how IH and related sleep disorders affect real people. Consider submitting your story. Apply to match with a medical student who wants to learn more about living with a rare disease.
SomnusNooze E-Newsletter. Check out our complete archives, conveniently organized by date and topic.
Videos & Podcasts. Access to HF conference videos, press videos, and more.
Ask the Doctor. Questions our constituents have asked. Answers from expert physicians/researchers.
Journal Article Summaries. Read our collection of summaries designed to make research easier to understand.
Classification of Hypersomnias. A deep dive for those who want to learn more about the diagnosis and differentiation between hypersomnia disorders.
Glossary.

Advocate for Yourself

Self-Advocacy Tips. HF’s brochure with tips on advocating for yourself, available for download.
Idiopathic Hypersomnia Severity Scale (IHSS). Get free access to this validated tool designed specifically to measure the spectrum and severity of IH symptoms. Fill it out now and discuss with your doctor!
How to Choose a Healthcare Provider. What’s important to consider and what questions to ask.
Directory of Healthcare Providers. Search our database of providers with experience treating hypersomnias. Want to suggest your provider? Contact us and we will reach out to them.
Emotional Well-Being. Check out our articles on this important topic.
Hypersomnia Alliance. HA maintains a list of some available support groups, runs a local support group in Atlanta, GA, and organizes occasional trips (called “Snooze Cruises”) for people with IH and related disorders. Also see HF’s Self-Advocacy Tips for more information on finding and choosing a support group.
Advice for Living With a Hypersomnia From People Who Have Hypersomnias. Advice on how to describe IH in a nutshell, effectively use telemedicine, join support groups, and more.
IH Medical Alert Card. Download a new card now and ensure your emergency information is updated.
Anesthesia, Hospitalization and Emergency Planning. Talk to your doctors if you have upcoming anesthesia or hospitalization, or just to be prepared in case of an emergency. Download our guide now, along with its companion Anesthesia/Hospital Care Plan, for you to complete with the help of your doctors. (Earlier versions of these documents are available in Deutsche, Español and Français.)
Sleeping/Napping in Cars Safely. Do you ever nap in your car? Check out our guide for how to nap in your car more safely.
Education Essentials. Students and parents, check out our comprehensive guides and resources for both K-12 and Higher Ed students.

Get Involved

Donate to the Hypersomnia Foundation. Please consider becoming a monthly donor! Monthly donations help us to budget and plan – though donations of any size are deeply appreciated, whether one-time or monthly. The Hypersomnia Foundation is the leading patient advocacy group for people with idiopathic hypersomnia (IH) and related sleep disorders. As a 501(c)(3) non-profit working on behalf of rare sleep disorders, donations from our community are absolutely essential to our work. Without you, there would be no Hypersomnia Foundation (a rare disorder means a very small pool of donors, which means EVERY donation has much more impact)! HF is a careful steward of every donation. See our Annual Reports.
HF Events. Meet other people with hypersomnias and their families, learn about new research and treatments from top sleep clinicians and researchers, and much more…
Research Studies. Participate in ongoing research, including clinical trials for new medications. Also, learn FAQs about participating, and check out results of past research.
Volunteer for HF. You can make a real difference by becoming a volunteer! Whether you have a special skill that meets a need for HF, or are just motivated to lend a hand, please let us know! Here are just a few of the options for volunteering with the Hypersomnia Foundation:
- Become a legislative advocate for HF (learn how to approach your state legislators and more…)
- Join our PAAC (Patient Advisory and Advocacy Council). This Advisory Council is an important resource for the HF Board.
- Volunteer at our events. Help attendees get the most out of HF’s education days and conferences.
- Assist with writing and/or editing our e-newsletter, web pages, and more.

Stay in Touch With HF

Sign up with the Hypersomnia Foundation to stay up to date with the latest news and upcoming events. We’ll also send you a welcome package!

HF’s International Patient Registry

Joining our registry at CoRDS (Coordination of Rare Diseases at Sanford) provides valuable data to sleep researchers. Your data can help lead to the next big breakthrough!

Disability & Health Insurance

Learn more about finding insurance and filing claims successfully in order to access the treatments you need at an affordable price or set up a disability income stream if you can no longer work. A must-read section for all those with IH and related sleep disorders. (For workplace accommodations, read more HERE.)