Happy February! Let’s get up to date with the news we’ve shared via social media with this latest edition of “In Case You Missed It!”
- CORDS REGISTRY UPDATE: You hold the key to solving this complicated puzzle of rare sleep disorders!
- NOW RECRUITING: The Restore Study now recruiting people age 16 and up with narcolepsy type 1 or 2.
- FREE VIRTUAL WEBINAR: Registration open for RARE on the Road—Rare Disease Leadership Interactive Webinar.
- SHOP AND DONATE: Shop through AmazonSmile and the HF gets a donation!
Don’t worry if you’ve missed anything. We’ve got you covered!
CORDS REGISTRY UPDATE
As of February 2021, the Hypersomnia Foundation Registry at CoRDS (Coordination of Rare Diseases at Sanford) has over 2,650 participants and we continue to grow by 50+ participants per month! If you have been diagnosed with idiopathic hypersomnia, Kleine-Levin syndrome, narcolepsy, or hypersomnia associated with certain other conditions, you can make an important contribution to hypersomnia research by joining the Hypersomnia Foundation’s Registry at CoRDS. Sharing information about your symptoms, your previous treatments, and your diagnostic journey holds the key to solving this complicated puzzle of rare sleep disorders by providing a valuable dataset for researchers to study.
Go to our International Patient Registry page for more information and a step-by-step guide on how to enroll. If you are already a registry participant, be sure to update your information annually. Also, be sure to check out the most recent CoRDS Summary Report.
INTRODUCING FRANCES SMALLDRIDGE—HF’S NEW UK LIAISON
Join us in welcoming FRANCES SMALLDRIDGE—The Hypersomnia Foundation’s new UK LIAISON! Frances is studying medicine at the University of Buckingham, UK. After being diagnosed with idiopathic hypersomnia (IH)/type 2 narcolepsy in 2019, Frances discovered the Hypersomnia Foundation while searching for information and support on this condition that she then knew nothing about.
Frances explains, “It has become evident to me how challenging it can be to live with a condition that is both invisible and not yet a household name, particularly with a new diagnosis or in a new country. By acting as a UK liaison for the Hypersomnia Foundation, I hope to aid others in similar situations, by extending the support of the Hypersomnia Foundation, and all its resources, internationally. I greatly look forward to increasing awareness of IH and advocating and providing support for those affected by it and similar conditions.”
RESTORE STUDY NOW RECRUITING
The Restore Study is now recruiting people age 16 and up with narcolepsy type 1 or 2 in the U.S. The Restore study is an open label study of FT218, a once-nightly formulation of sodium oxybate in people with narcolepsy. This study is evaluating the long-term safety and tolerability of a once-nightly formulation of sodium oxybate extended-release oral suspension (FT218) and the ability to switch from twice-nightly immediate-release sodium oxybate to once-nightly FT218 for people with narcolepsy. For more information about this and other clinical trials, go to our “Clinical Trials/Research Studies” page.
REGISTRATION OPEN FOR RARE ON THE ROAD—RARE DISEASE LEADERSHIP INTERACTIVE WEBINAR
Registration for the RARE on the Road—Rare Disease Leadership Interactive Webinar is now OPEN!
This year’s event, hosted by the EveryLife Foundation for Rare Diseases and Global Genes, will consist of one interactive webinar on March 23, 2021 from 11:00 am – 1:30 pm ET. Participants will engage in interactive tutorials on how to tell your rare story and how to get involved in advocacy. Learn from special guest speakers, including a rare disease patient and policy expert, on how to make an impact in the lives of others and amplify the patient voice from anywhere in the U.S. The event will also have three state-specific virtual meetings – May 4th for Nevada residents, May 11th for Florida residents, and May 18th for Illinois residents. Each state-specific event will be geared toward uniting and activating the rare disease community at the local level.
Whether you’re new to the rare disease community or a “seasoned veteran,” the RARE on the Road Rare Disease Leadership Webinar will bring critical education and insights to rare disease patients, caregivers, and other advocates. Visit the Rare Tour website for details and registration information.
DON’T FORGET TO SHOP THROUGH AMAZON SMILE
It’s easy to spread a little love to the Hypersomnia Foundation every time you shop on Amazon! Simply go to AmazonSmile and confirm “Hypersomnia Foundation” as your charity of choice and Amazon will donate a portion of your purchase price to our organization.
You shop. Amazon gives. It’s that simple!