SomnusNooze e-newsletter
News, stories and updates from the world of sleep
SomnusNooze topics: CoRDS registry
In Case You Missed It! – October 2022
If you’ve missed any of the latest news we’ve shared through our social media this month, don’t worry! Get up to date with this edition of “In Case You Missed It!” Save the date for the HF 2023 #BeyondSleepy conference in Indianapolis!... read >
A Call to Action: Racial Disparities in Hypersomnia Disorders
The Hypersomnia Foundation has long felt that welcoming everyone, regardless of ethnicity, gender, religion, or any other demographic, is essential to who we are, and must be incorporated into our efforts to raise awareness and reach undiagnosed patients.... read >
IH Symptom and Treatment Insights From the HF Patient Registry at CoRDS
Since March 2015, over 2,300 people have joined the HF International Patient Registry at CoRDS. We now have a valuable dataset for researchers to study and a new research paper has just been published: “Disease Symptomatology and Response to Treatment... read >
In Case You Missed It! – January 2020
Happy New Year! Let’s start 2020 by being well informed! Get up to date with the news we’ve shared via social media in the latest “In Case You Missed It!” TAKE A 10-MIN SURVEY AND HELP NORD LEARN MORE ABOUT IH! The National Organization... read >
See How Our Hypersomnia Patient Registry Has Helped Researchers!
You’ve participated, and NOW THERE ARE RESULTS! Our hypersomnia-specific patient registry, which was established at CoRDS (Coordination for Rare Diseases at Sanford) in 2016 and which has grown to nearly 1,500 participants, has already helped... read >
Here’s How People with IH (and Their Supporters) Can Participate in Ground-breaking Research!
Dizzy? Having troubles with your bowels or bladder? Body temperature up? Blood pressure down? Heart rate up AND down? Any of this could be related to your IH. Whether or not you have these symptoms, you can help researchers, right now, to better... read >
Research Is Critical and Ongoing
YOU COUNT! Time to update CoRDS information! Please make time to log into the CoRDS online portal and keep all of your information up to date. Not only is it important to keep your information up to date in case researchers would like CoRDS to contact... read >
Rare Disease Day: Research Brings Hope – My CoRDS Experience
On February 28, 2017, the Hypersomnia Foundation (HF) joins with all those participating in Rare Disease Day supporting the slogan, “Research Brings Hope to People Living with a Rare Disease.” On Rare Disease Day, through social media and our... read >
You Are Amazing!
Once again, our incredible hypersomnia family has come together to support each other in a most amazing way. As you know, several anonymous donors challenged our community to enroll in the Hypersomnia Foundation Registry at CoRDS during the month of... read >
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,... read >