In Case You Missed It! – April 2020
Now more than ever, we are grateful to be able to stay in touch with our community through social media, email, and SomnusNooze. If you’ve missed any of the latest news we’ve shared, don’t worry! Get up to date with this latest edition of “In Case You Missed It!”
- CONFERENCE CANCELLED: HF cancels #BeyondSleepy 2020 Conference in Philadelphia
- HELPFUL INFORMATION: Resources, financial assistance, and social support during COVID-19 pandemic
- GET ANSWERS: IH and the risk of COVID-19
- CLINICAL TRIALS: Important updates on current research studies
- ADVOCACY IN ACTION: HF joins fight protecting the rare disease population
- GET CREATIVE: NIH sponsoring rare disease art contest
- SLEEP AWARENESS WEEK: HF Chair and CEO featured during week long celebration
So don’t worry if you’ve missed anything. We’ve got you covered!
HYPERSOMNIA FOUNDATION CANCELS JUNE 2020 CONFERENCE
While there is no doubt this is the right decision, and many have lost much more to this pandemic, it’s still difficult to give up one of the few opportunities in our community to meet in person. So many people with IH, narcolepsy and KLS routinely live in a state of lock-down because of their disorder.
Talking about those experiences with one another is rare itself, and hearing directly from the dedicated researchers and physicians who have made rare sleep disorders the focus of their work is inspiring. We’ll hope for better days when we can meet again.
In the meantime, we extend our heartfelt wishes to everyone in the rare sleep disorder community, for your safety and well-being, and we thank you for your support of the Hypersomnia Foundation.
If you purchased tickets to the conference, refunds will be processed through EventBrite in the next 48 hours. If you have made reservations through our room block at our hotel venue, Le Meridien, cancellations can be made by calling Marriott’s central reservation line at (888) 236-2427 as the Le Meridien hotel itself is closed.
Coming together to help each other thrive is what the rare disease community does best. As the novel coronavirus and COVID-19 continue to spread around the world, you may have questions and need information on a variety of topics.
GLOBAL GENES – Global Genes has compiled a list of resources to make finding the information you need as easy as possible.
NORD – The National Organization for Rare Disorders, Inc. (NORD) is offering financial assistance to members of the rare community affected by the COVID-19 pandemic. The program will provide financial relief up to $1,000 annually to support critical, non-medical needs.
For eligibility requirements and more information on the NORD COVID-19 Critical Relief Program, please contact NORD by telephone at 203.242.0497 or via email at .
HYPERSOMNIA ALLIANCE – Things aren’t normal right now and it is especially important we stay connected to each other. Isolation and being quarantined doesn’t mean you are alone. We strongly encourage you to follow the Hypersomnia Alliance. This amazing group’s primary goal is spreading hypersomnia awareness and is dedicated to encouraging support to those living with a neurological hypersomnolence disorder. Share your concerns, thoughts, and inspirations with others. We may be apart, but we are never alone.
IH AND THE RISK OF COVID-19
“Am I at special risk from COVID-19 because of my idiopathic hypersomnia (IH)?” We have received many questions like this from the hypersomnia community, so we turned to Dr. David Rye of Emory University (and the head of our Scientific Advisory Board) for some answers. Here’s what he has to say:
“There appears to be some concern that people with IH may have immune systems that don’t function properly or that some medications may suppress one’s immune system, thus rendering people with IH more susceptible to COVID-19 and its consequences. There is very limited scientific evidence that justifies these concerns. What evidence that does exist in the medical literature is anecdotal and very limited; thereby, it’s not possible to offer any recommendations that are specific to the IH community. Rather, I encourage everyone to follow CDC guidelines and any additional ones that may be unique to your immediate location and personal circumstances (such as social distancing, “shelter at home,” etc.).”
CLINICAL TRIAL UPDATES
An FDA decision on Jazz Pharmaceuticals’ low sodium Xyrem is expected by July 2020, but only for narcolepsy. Clinical trials for IH are on-going despite COVID-19 with a target completion date of September 2020. Read more here.
Enrollment for the SPARKLE 2002 clinical study is currently on hold due to COVID-19. This clinical study will be testing an investigational drug (TAK-925) to see if it could potentially be a safe and effective way to help increase wakefulness for people with idiopathic hypersomnia. TAK-925 is an orexin 2 receptor agonist in development for selected sleep disorders such as Idiopathic Hypersomnia.
HF JOINS FIGHT ADVOCATING PROTECTION OF RARE DISEASE POPULATION
The Hypersomnia Foundation is working on behalf of everyone concerned about accessing medications during this pandemic. Spearheaded by the EveryLife Foundation for Rare Diseases, HF signed onto a letter sent nationwide urging governors, insurance commissioners, Medicaid directors, and executive directors of boards of pharmaceutical companies to protect rare disease patients and high-risk populations during the COVID-19 crisis.
Over 200 patient advocacy organizations signed the letter that urged the following:
- Loosening of restrictions in getting prescription medications;
- Issuing an emergency regulation requiring that insurers operating within the state allow a one-time 90 day refill of covered prescription medications and lift barriers to obtaining medication from out-of-network pharmacies;
- Preparing for the possibility of supply chain disruptions by requiring insurers to cover off-formulary prescription drugs if there is not a formulary drug available to treat the insured;
- Ensuring prior authorization and reauthorization requirements do not impede access to care and treatment;
- Facilitating authorization of home infusion and injection services and ensuring reimbursement rates appropriately reimburse for such services;
- Requesting authority to extend appeal and fair hearing deadlines to ensure important protections for patients who are seeking access to care and treatment; and
- Seeking flexibilities afforded under section 1135(b)(1)(C) of the Social Security Act.
Working together, we can get through this crisis!
NIH SEEKING SUBMISSIONS FOR RARE DISEASE ART CONTEST
Calling all Creatives!! Things are a bit challenging right now, so take a deep breath, unleash your inner artist and take part in the “Rare Diseases Are Not Rare! 2020 Art Challenge”!
The National Center for Advancing Translational Sciences (NCATS), part of the National Institutes of Health (NIH), is looking for innovative ART and MEDIA that will help raise awareness for all rare diseases, bring attention to the many people with rare diseases, and highlight the need for research and the development of new treatment.
Be creative! Submissions can be a music video, song (with or without sheet music), dramatic reading, poem, painting, mime, poster, comic, animation, photo/collage, puppetry, or creating a new name for “rare diseases” as a whole.
Cash prizes for first, second and third place winners are $3,000, $1,500, and $500, respectively. All winners and 10 honorable mentions will be posted on the NCATS public website.
Entries must be submitted by email to by 5:00 p.m. EST on April 30, 2020. For more information visit the NIH website and be sure to share your artwork with the Hypersomnia Foundation so we can share on our social media!
HF CHAIR and CEO FEATURED DURING SLEEP AWARENESS WEEK
Thank you Jazz Pharmaceuticals for understanding the importance of building awareness of often-overlooked sleep disorders and bringing attention to idiopathic hypersomnia during #SleepAwarenessMonth by sharing a quote from our Chair and CEO, Diane Powell:
“This mission of the Hypersomnia Foundation – captures in our slogan, ‘Beyond Sleepy’ – is to improve the lives of people with idiopathic hypersomnia (IH), a rare sleep disorder characterized by excessive daytime sleepiness and long sleep times. We strive every day to engage, inform and champion our global community so that people with IH and related sleep disorders can move beyond the limitations of their condition to live richer, fuller lives.”
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