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Together We WILL Solve The Puzzle of Hypersomnia

Why did the Hypersomnia Foundation Board of Directors and volunteers work for more than two years with physicians and researchers to create a hypersomnia-specific registry? Because, as David Meeker, President and CEO of Genzyme, has said, “Creating a registry of patients is the single most...

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Together, We Can Solve the Puzzle of Hypersomnia

Together, We Can Solve the Puzzle of Hypersomnia [caption id="attachment_2494" align="alignright" width="300"] What is a Patient-Powered Registry?Simply put, a patient registry is a collection—for one or more purposes—of standardized information about a group of patients who share a condition or experience. According to a publication from the...

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Idiopathic Hypersomnia – A Turtle Going Uphill Through Molasses in January

Share the Journey Stories Words escape me. I am a reader, a writer, and a highly educated woman with multiple degrees. Eloquence is high on my list of valued traits. Communication is one of my strengths, and something I’ve always been commended for. And yet, words escape...

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Sleep Disorders and Social Security– What You Need to Know

Social Security Disability Series: Part 2 Sleep Disorders and Social Security Disability – What You Need to Know By Anjel Burgess, JD Jennie has been fortunate enough to secure her short-term disability benefits. She has also hired an Attorney to assist her with the Social Security Disability application...

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Solving the Puzzle of Hypersomnia One Piece at a Time

The Hypersomnia Foundation Board of Directors is thrilled to announce the launch of the Hypersomnia Foundation’s Registry at CoRDS (Coordination of Rare Diseases at Sanford). Whether you have idiopathic hypersomnia, Kleine-Levin syndrome or narcolepsy type 1 or 2, please enroll in the Registry today to...

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