Physical Health United States Project #22885

Hypersomnia Foundation--Awareness and Education

Project Report | Dec 18, 2018
Increase Awareness of Idiopathic Hypersomnia

By Stephanie Wells | Executive Director

The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, and research. The Foundation does this, in part, through actively participating in nationwide sleep conferences, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing individuals and their families with free educational and other support materials.

The Hypersomnia Foundation has successfully:

Increased its outreach in the sleep disorder and medical research community by participating in multiple sleep-related conferences.
Grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 1,450 participants, thereby collecting vital information for researchers.
Created a series of downloadable Educational Guides for K-12 through College for students with IH and related sleep disorders, as well as their parents and school officials.
Developed a downloadable Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person.
Crafted a downloadable IH-specific Medical Alert Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs.
Continued to share important research and other important news relating to hypersomnia via our monthly newsletter, SomnusNooze, to almost 3,000 subscribers.
Supported a scholarship for a college-bound student with IH through a partnership with Project Sleep.
Expanded our online Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.
Collaborated with our patient advisory board, comprised of individuals with IH and related disorders (and their supporters), thus helping us stay informed about issues affecting the sleep disorder community.
Increased our Social Media outreach to over 4,500 active followers, via Facebook, Instagram, Twitter and LinkedIn.

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