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Mission

Our Mission

To improve the lives of people with idiopathic hypersomnia and related disorders by advocating on their behalf, providing support, educating the public and healthcare professionals, raising awareness, and funding research into effective treatments, better diagnostic tools, and, ultimately, a cure for these debilitating conditions. The Hypersomnia Foundation is incorporated as a 501(c)(3) nonprofit.

Our Core Beliefs

  • All people with hypersomnia deserve full and proper treatment.
  • Optimal diagnosis and treatment derives from better knowledge.
  • All of the causes of hypersomnias can be discovered and properly treated.
  • Through research, it will one day be possible to predict, prevent, and personalize treatment for hypersomnias.

Our Objectives

  1. To increase community and physician awareness of idiopathic hypersomnia (IH) and the related disorders (hypersomnias).
  2. To provide a source of high-quality, timely education and resources regarding IH for people with hypersomnia, their supporters, and healthcare providers.
  3. To promote much needed research into the causes and treatments of IH, with a special focus on novel ideas with excellent potential for transforming care of people with hypersomnia.
  4. To assist in translating new discoveries into improved outcomes and quality of life for people with hypersomnia.

Our History and Our Achievements

In 2014, the Hypersomnia Foundation was incorporated as a 501(c)(3) nonprofit organization to advocate, educate, and provide resources for research on behalf of people affected by idiopathic hypersomnia and related disorders.

The founders of HF listed the following goals in 2014, and we are proud to note the progress towards or the achievement of each of these:

  1. Providing education for people with hypersomnia, medical professionals, and scientists. 2017: HF has distinguished Medical and Scientific Advisory Boards of physicians and researchers who carefully vet the information we disseminate on idiopathic hypersomnia and related disorders. We publish a monthly e-newsletter, communicate through social media, provide speakers, hold annual conferences, and provide an educational brochure, web pages, and handouts.
  2. Representing people with hypersomnia at medical meetings, with pharmaceutical companies, with sleep-related organizations, and at the National Institutes of Health. 2017: HF Board members attend medical meetings (such as the World Sleep Congress October 2017 in Prague). We communicate the needs of the IH community to pharmaceutical companies and NIH.
  3. Hosting conferences. 2017: HF has held three annual conferences, in Atlanta, Denver and Boston.
  4. Establishing a hypersomnia patient registry. 2017: Last year HF launched our registry for people with IH and related disorders through CoRDS (Coordination of Rare Diseases through Sanford Research). Over 650 people with these rare disorders have shared their data with the registry to aid research.
  5. Funding research to identify the cause of and effective treatments for hypersomnia. 2017: HF has established and continues to build a restricted fund for research.

Through the incredible generosity of our donors, we have achieved all this and more in just a few short years! We continue to grow and expand the founders’ vision for HF to make a positive impact in the lives of people with IH and related disorders. Thank you! to all those who have donated, and continue to donate, to the mission and the work of the Hypersomnia Foundation.

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