SomnusNooze e-newsletter
News, stories and updates from the world of sleep
SomnusNooze topics: Take action!
Connect at the Conference
Building on last year’s successful conference, the Hypersomnia Foundation will once again host a number of prominent clinicians and medical researchers to speak at our meeting in Denver on June 12th! “Beyond Sleepy in the Mile High City” will... read >
Join Us for the 2016 Hypersomnia Foundation Regional Conference: Beyond Sleepy in the Mile High City!
Join the Hypersomnia Foundation for our first regional conference “Beyond Sleepy in the Mile High City,” on Sunday, June 12, 2016, from noon to 5:00 pm MDT at the Embassy Suites Hotel in downtown Denver or via live Internet stream. You spoke and we... read >
National Sleep Awareness Week | March 6-13 | #beyondsleepy
During National Sleep Awareness Week, which begins this coming Monday the Hypersomnia Foundation would like to feature your stories and your experiences as a person with idiopathic hypersomnia. We want to showcase how idiopathic hypersomnia affects... read >
Hypersomnia Registry Process | A Rare Disease Day Update
Feel free to share the images below on social media in honor of Rare Disease Day! Right click and save the image to your own computer, and then upload to social media. Cover Photo Social Media Infographic ... read >
Your Journey Fosters Awareness
There is no greater agony than bearing an untold story inside you—Maya Angelou Your personal story about hypersomnia is a powerful means to raise awareness of a journey with a rare chronic disorder. Although each person’s experiences are unique,... read >
The Cost of Prescription Medications Has Risen by More Than 20% in the Past Year
See our Disability and Insurance web page for updated content—to learn more about finding insurance and filing claims successfully in order to access the treatments you need at an affordable price or set up a disability income stream if you can no... read >
BUNIHPPS Study Final Reminder
This is your final reminder email about BUNIHPPS- a survey research study for patients with narcolepsy or idiopathic hypersomnia. Dr. William DeBassio and Sara Kowalczyk are the study investigators of the Boston University Narcolepsy and Idiopathic... read >
The First Multi-Site Clinical Trial for IH and Type 2 Narcolepsy in the US Is Underway
ARISE 201 is the first double-blind, placebo-controlled, crossover, multicenter study of a drug (BTD-001) for the treatment of idiopathic hypersomnia (IH) and type 2 narcolepsy (T2N) in adults. More than 20 study sites throughout the United States are... read >
BUNIHPPS – An Online Research Survey for Narcolepsy & IH Patients
https://www.hypersomniafoundation.org/research-study/bunihpps/ Dear IH Community members: A research team at Boston University has developed BUNIHPPS -- a survey research study for patients with narcolepsy and idiopathic hypersomnia. Also called the... read >
Research Opportunity
Victoria University, Melbourne Australia is commencing a study about the general health and well-being of people within three groups. One group will be those with both narcolepsy and cataplexy. Cataplexy is a sudden loss of muscle tone, often triggered... read >