Newly Diagnosed

“I’ve just been diagnosed with idiopathic hypersomnia (or a related sleep disorder). 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.

1. Understand Your Diagnosis

2. Get Support

Coping with a chronic condition can be stressful and challenging. Seek out support as you go through the process of diagnosis and treatment. Also, share Hypersomnia Foundation (HF) resources with family, supporters & friends so they too can understand what you are going through.

3. Get Treatment

4. Advocate for Yourself

  • HF’s Brochure. Download and share (available in Deutsche; English; Español; Français).
  • HF’s IH Medical Alert Card. Download and fill it out now.
  • Self-Advocacy Tips. Check out HF’s guide. Self-advocacy means representing yourself to the best of your ability and being proactive about your care. Being involved in the decision-making process with your healthcare provider about your care and treatment will help you feel confident that everything possible is being done to manage your symptoms.

5. Take Action

Become empowered and involved, both for yourself, and for the future of all those with IH and related disorders.

  • International Patient Registry. Joining the registry provides valuable data to sleep researchers; your data might help lead to the next big breakthrough!
  • 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…
  • 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! HF is a careful steward of every donation. See our Annual Report.

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!

Hypersomnia Foundation CoRDS Patient Registry

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!


The contents of this website, including text, graphics and other material, are for informational purposes only. This website is not intended to be a substitute for professional legal or medical advice, diagnosis or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Always consult your own attorney or other legal advisor with any legal questions you may have. The Hypersomnia Foundation does not recommend or endorse any specific tests, physicians, lawyers, legal advisors, products, procedures, opinions or other information referenced on this website. Reliance on any information on this website is solely at your own risk.

The Hypersomnia Foundation makes no representations or warranties about the satisfaction of any government regulations requiring disclosure of information on prescription drug products. In no event shall The Hypersomnia Foundation be liable for any damages (including without limitation incidental and consequential damages) or costs (including without limitation attorney’s fees) based on any claim arising from the use of this website and/or its content.