Hypersomnia Foundation--Awareness and Education

Organization	Hypersomnia Foundation, Inc.
Region	United States
Website	Website
Facebook	Facebook
Twitter	@Twitter
ProjectLeader	Diane Powell

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The effects of Idiopathic Hypersomnia (IH), a rare, chronic, neurological disorder, leave one with an insatiable need to sleep, along with other symptoms such as sleep inertia and sleep drunkenness. The relentless nature of the disorder negatively impacts mental and physical tasks, including holding a job, going to school, and maintaining relationships. The HF is dedicated to increasing awareness of this disorder, and to finding more effective treatments (and, hopefully, someday a cure).

Challenge

Idiopathic hypersomnia is a rare sleep disorder about which little is known. There exists a need to educate both the pubic and the medical community about its characteristics, so patients can be diagnosed more quickly. (Currently there is, on average, a 7-year gap from initial symptoms to correct diagnosis.) Further, many primary care physicians and other doctors have not heard of this disorder, so one goal is to increase awareness within the medical community itself.

Long-Term Impact

Improved awareness of IH is essential in changing the time from onset to a proper diagnosis, as well as encouraging researchers and pharmaceutical companies in developing more effective diagnostic tools and treatments.

References

1. http://www.hypersomniafoundation.org
2. http://www.hypersomniafoundation.org/2018hfconf/
3. http://www.hypersomniafoundation.org/about-idiopathic-hypersomnia/
4. http://www.hypersomniafoundation.org/get-our-brochure/
5. http://www.hypersomniafoundation.org/join-the-patient-registry/

Additional Documentation

https://www.globalgiving.org//pfil/22885/projdoc.pdf

Project Gallery

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  Let's get #BeyondSleepy

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  HF Receiving AASM's 2022 SLEEP CHAMPION Award

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  BEYOND SLEEPY 2022 Conference Presentation

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  BEYOND SLEEPY 2022 Conference Panel Discussion

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  HF's BEYOND SLEEPY 2022 Conference Meet & Greet

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  BEYOND SLEEPY 2022 Conference Workshop

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[[Category:Lack of Awareness and Education about Hypersomnia Projects]], [[Category:Physical Health in United States Projects]]

[[Category:Lack of Awareness and Education about Hypersomnia Projects in United States]], [[Category:Physical Health in United States Projects in United States]]