SomnusNooze e-newsletter
News, stories and updates from the world of sleep
Back to Campus and Prepared: Resources for College Students with IH
The academic year has recently begun for many, whether online or at traditional land-based, brick and mortar campuses. For the student with IH, there is much more to think about besides settling into your living space, squaring away your class schedule,... read >
YOU Power the Engine for #BeyondSleepy
Medical Advisory Board (MAB) and Scientific Advisory Board (SAB) volunteers: The Hypersomnia Foundation’s Medical and Scientific Advisory Boards, otherwise known as the MAB and SAB, are comprised of world experts in their fields of sleep research and... read >
WEP Clinical – Expanded Access to Medications Not Yet Approved for General Prescription
October 2019 Addendum SEE ALSO: Global Genes RARE Toolkits Access to Unapproved Medicine: Is This an Option for Me? (USA) Access to Unapproved Medicine: Is This an Option for Me? (Canada) Do you and your healthcare provider feel you... read >
Welcome to the Hypersomnia Foundation Board, Betsy!
We are delighted to welcome Elizabeth (Betsy) Ashcraft to our Board of Directors. “Betsy has long been a supporter of the Hypersomnia Foundation, and we are excited to have someone with her talent and experience join the Board,” said Diane Powell,... read >
A Soothing Balm: Healing a Painful Experience
NOTE: this is part 3 of a 3 part series. For Part 1, click HERE. For Part 2, click HERE. I want to add a postscript to my Personal Journey story that appeared in the July 2017 edition of the HF’s SomnusNooze. It relates to the traumatic experiences I... read >
The Hypersomnia Foundation at the World Sleep Congress in Prague
The Hypersomnia Foundation (HF) is thrilled to announce its attendance at the World Sleep Congress (WSC), hosted by the World Sleep Society, October 7 to 11, 2017 in Prague. The Congress is well attended by world clinical and scientific sleep... read >
Idiopathic Hypersomnia Standard Characteristics
It’s often a struggle to describe to others – sometimes to doctors – the essence of idiopathic hypersomnia. Now, the Hypersomnia Foundation presents Idiopathic Hypersomnia Standard Characteristics. This one-page document, reviewed and approved by... read >
A Letter to My Health Care System About Hypersomnia
BY: Karen Berger – MN-USA NOTE: this is part 2 of a 3 part series. For Part 1, click HERE. For Part 3, click HERE. I have had idiopathic hypersomnia (IH) since I was 15 and was finally diagnosed 11 years ago. Since then I have been doing well on... read >
Share Your Journey
Your Story Matters Everyone has a story to tell that will resonate, educate or motivate. Coming to terms with having a rare, chronic condition can feel like a long and sometimes lonely process. Knowing others have walked a similar road as you,... read >
Arise Clinical Trial
CLINICAL TRIAL ENROLLING PATIENTS WITH IDIOPATHIC HYPERSOMNIA AND NARCOLEPSY TYPE 2 Balance Therapeutics is evaluating an investigational new drug BTD-001, to treat excessive daytime sleepiness in individuals diagnosed with idiopathic hypersomnia... read >