Healthcare Providers
The Hypersomnia Foundation provides numerous free and vetted resources for healthcare providers, including patient materials, listing in our provider directory, links to clinical trials and much more.
Healthcare Provider Directory
- Join Our Directory. If you are a healthcare provider with experience treating people with hypersomnias, anywhere in the world, please join HF’s directory.
- Search Our Directory. Find an experienced specialist provider for patients who need a referral.
Continuing Medical Education (CME)
Obtain CME credits for learning about IH and its differential diagnosis via the following activities:
- A New Dawn for Better Outcomes in Patients With Idiopathic Hypersomnia: New Data, New Guidance, New Treatments. Based on a symposium at SLEEP 2022. Jointly accredited by HME and the Hypersomnia Foundation.
- Patient Perspectives—Living With IH: Watch HF’s presentations for the Society of Anesthesia and Sleep Medicine’s 2020 Annual Meeting
- UpToDate’s Article: “Classification of Sleep Disorders”
- UpToDate’s Article: “Approach to the Patient With Excessive Daytime Sleepiness”
- UpToDate’s Article: “Excessive Daytime Sleepiness due to Medical Disorders and Medications”
IH Insights From SLEEP 2021 Annual Meeting: “Breakthroughs in the Management of IH” and “The Latest Evidence on the Safety and Efficacy of Emerging Therapies for IH”
Resources for Diagnosis
- IH Summary: Characteristics & Diagnostic Criteria. Access and print our summary or contact us to request copies for your patients.
- Classification of Hypersomnias. An up-to-date and detailed discussion of this topic by our Medical Advisory Board Chair, Dr. Lynn Marie Trotti, Associate Professor of Neurology at Emory University.
- HF’s Sleepy Patient HINT Test. A quick screening tool for primary care providers/educators/etc. to help determine when to refer sleepy people to sleep specialists.
Guide for Sleep Study Centers and Research Study Sites Involving Participants Who Have Hypersomnias. Important information for all healthcare providers who are involved in research studies or the operation of sleep study centers.
- Central Disorders of Hypersomnolence: A comprehensive 2020 journal article by Dr. LM Trotti describing the symptoms, diagnosis and treatment of central hypersomnias.
- Idiopathic Hypersomnia: A free full text 2017 journal article by Dr. LM Trotti, including differential diagnosis.
- UpToDate’s Article: “Approach to the Patient with Excessive Daytime Sleepiness“ (free access).
- UpToDate’s Article: “Excessive daytime sleepiness due to medical disorders and medications.“ An excellent resource for differential diagnosis of EDS.
- Neurological Differential Diagnosis for Patients With Excessive Daytime Sleepiness. A 2020 article by Dr. Raman Malhotra discussing diagnostic methods for both sleepy and sleepless patients from a neurologist’s perspective.
- Orthostatic Intolerance Symptoms in Hypersomnias: A 2021 journal article demonstrating that 1/3 of pediatric hypersomnia cases exhibited the symptom of OI at initial presentation with female predominance. Screening for autonomic symptoms in hypersomnias, especially at initial presentation before pharmacologic treatment begins, may identify a treatable co-morbidity.
- Clinical Symptoms of Children vs. Adults With Narcolepsy and Cataplexy: An overview of the primary differences in NT1 symptoms between those under and over 18 years old, including a link to the source journal article.
- Recognize Narcolepsy in Pediatric Patients: Detailed descriptions of symptom presentation, including cataplexy videos and screening and clinical interview tools.
- Diagnosing Narcolepsy in African Americans: A summary of research highlighting racial differences in the presentation of narcolepsy and the more frequent need for hypocretin testing in African Americans with hypersomnias.
- CSF Orexin/Hypocretin Testing in the U.S.: Article describing the purpose and procedures for orexin/hypocretin testing, which is available by sending CSF to Mayo Clinic Labs.
Resources for Treatment
- Treatment. A detailed review of current and upcoming treatment options for idiopathic hypersomnia by our Medical Advisory Board.
- Idiopathic Hypersomnia Severity Scale (IHSS). Get free access to this validated tool designed specifically to measure the spectrum of IH symptoms.
- Parenthood & Pregnancy. Considerations for people who have hypersomnias; vetted by OB/GYN, pediatrics, sleep medicine and lactation experts.
- Birth Control, Menstruation & Menopause. Considerations for people who have hypersomnias; vetted by gynecology and sleep medicine experts.
- Anesthesia, Hospitalization and Emergency Planning. Access and print our essential Guide for your patients who need to undergo anesthesia or hospitalization or who want to be prepared in case of emergency (or contact us to request free copies). We make preoperative consults easier with our Anesthesia/Hospital Care Plan template—simply fill in the blanks online and print. (Earlier versions of these documents are available in Deutsche, English, Español, and Français).
- Disability & Health Insurance. Help your patients learn more about finding insurance and filing claims successfully in order to access necessary medical care at an affordable price or set up a disability income stream if they can no longer work. (For workplace accommodations, refer them HERE.)
- Support Groups. The Hypersomnia Alliance (HA) maintains a list of some available support groups to which you can refer your patients, or they can follow HA on Facebook HERE.
- Emotional Well-Being. Refer your patients to our articles on this important topic.
- CBT for Hypersomnia. A journal article on CBT clinical trial results. A copy of the treatment manual is available on request from the primary author.
- Clinical Trials/Research Studies. Ongoing research studies for your patients with IH and related disorders, including resources to help access medications that aren’t yet widely available.
More Resources for Patients
- HF Brochure & IH Medical Alert Card. Print or request for your patients, and/or simply direct them to our website. Our brochure is available in Deutsche, English, Español, and Français.
- Sleeping/Napping in Cars Safely. Do your patients nap in their cars? Please refer them to our guide for how to do so more safely.
- Self-Advocacy Tips. Print for your patients, or simply direct them to our webpage.
- Tips for Supporters. Check out and share our helpful tips from people who have hypersomnias and their supporters.
- Ask the Doctor Q&As. A collection of questions asked by our constituents, with answers written – or vetted by – experts.
- Personal Journey Stories. Learn how IH and related disorders affect real people. Encourage your patients to explore these and to consider submitting their own stories. They can also apply to be matched with a medical student who wants to learn more about living with a rare disease.
- Videos/Podcasts. Access HF conference videos, press videos, and more.
- Journal Article Summaries. Read or share our summaries, which are designed to make research easier to understand.
Resources for Students and Families
- HF’s Sleepy Students HINT Test. HF’s handout to help educators identify possible sleep disorders among students.
- Education Essentials for Students. Direct your patients with IH and related disorders to our comprehensive set of resources for both K-12 and Higher Ed students. And use our healthcare-provider specific resources:
- K-12 Student Success: Physicians Can Make an Important Difference. HF’s brief guide for office visits with K-12 students with IH.
- Guide to Requesting Accommodations for K-12 Students With IH. Simply fill in the blanks to request school accommodations.
- College Student Access: Physicians Can Make an Important Difference. HF’s brief guide for office visits with higher education students with IH.
- Guide to Requesting Academic Adjustments for College Students With Idiopathic Hypersomnia. Simply fill in the blanks to request school accommodations.
Events & Speakers
- Learn more about our speakers, where we’ve been and where we’re going. Watch conference videos.
- Attend and/or participate in a cutting-edge HF event.
- HF also attends a number of conferences each year to promote awareness and provide education.
- If you would like to speak at a future HF event, meet with an HF board member, OR are interested in finding a speaker (patient advocate or medical professional) OR are seeking a patient panel to discuss “living with IH”, please contact us.
HF’s International Patient Registry
- Please encourage patients with IH and related sleep disorders to join our registry at CoRDS (Coordination of Rare Diseases at Sanford).
- Contains data on over 3550 people with IH and the related hypersomnias. It’s free for qualified researchers to apply to access the data and/or to communicate with the respondents. (Contact CoRDS directly at cords@
sanfordhealth.org or 1-877-658-9192). - Review the complete registry questionnaire HERE.
Check out some initial results from the registry: 2020 Trotti et al, IH Symptom and Treatment Insights From the HF Patient Registry.