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.

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 

Resources for Diagnosis

Resources for Treatment

  • Treatment. A detailed review of current and upcoming treatment options for idiopathic hypersomnia by our Medical Advisory Board Chair, Dr. Lynn Marie Trotti. For specific information about treating women (from birth control and pregnancy to menopause), click 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
  • Anesthesia Guide. Access and print our essential Guide for your patients who need to undergo anesthesia 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 Care Plan template – simply fill in the blanks online and print. These documents are available in Deutsche, English, Español, Français, and 日本人.
  • Disability & Health Insurance. Information to help your patients access workplace accommodations, medications and disability insurance coverage.
  • 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. 
  • MAB & SAB. Meet the distinguished members of our Medical and Scientific Advisory Boards.

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, Français, and 日本人.
  • Self-Advocacy Tips. Print for your patients, or simply direct them to our webpage.
  • Tips for Supporters. Download our handout of helpful tips.
  • 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

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 2000 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.