Hypersomnia Foundation--Awareness and Education

Project Summary: The Hypersomnia Foundation is committed to increasing awareness of idiopathic hypersomnia (IH) in both the public arena and the medical community through outreach, education, awareness, and research. The Foundation does this, in part, through actively taking part in conferences and hosting educational events, sponsoring a hypersomnia-specific patient registry whose data is available to researchers, and providing physicians, sleep professionals, individuals and their families with free educational and other sleep disorder-specific support materials.

The Hypersomnia Foundation (HF) continues to provide information, resources, and support to the sleep disorder community through our website, social media, email, and our SomnusNooze e-newsletter.

Recent highlights include:

BEYOND SLEEPY 2022 HYPERSOMNIA FOUNDATION CONFERENCE

In early June, the Hypersomnia Foundation hosted a three-day conference in Charlotte, North Carolina connecting people with hypersomnias with researchers and patient advocates. Over 140 people attended our “Beyond Sleepy 2022” conference in-person and were joined by 450 virtual attendees.

Internationally known sleep medicine researchers presented on multiple topics related to sleep medicine and sleep disorders, including discussions on idiopathic hypersomnia treatments, current and future research, insight into sleep disorder diagnoses, new approaches to the classification of hypersomnias, cognitive-behavioral therapy for coping with idiopathic hypersomnia, and pediatric disorders of hypersomnolence.

Leading patient advocates moderated group discussions and interactive break-out sessions, which included discussions on what to expect as a participant in a clinical trial, working through insurance and disability barriers, accessing and affording prescription medications, how to plan for emergencies and hospitalizations, and active discussions surrounding diversity, equity and inclusion in health care. Break-out sessions were also held for families and caregivers of people with hypersomnias. Recordings of select conference sessions will be available on our website.

WORLD SLEEP 2022 and AASM SLEEP 2022 CONFERENCES

As part of our mission to raise awareness and advocate for more research and better treatments, we were sponsored exhibitors at the World Sleep 2022 Conference in Rome and at the American Academy of Sleep Medicine (AASM) SLEEP 2022 conference in North Carolina. We thank our Board members and volunteers for travelling to these conferences, working our exhibit booths, and sharing information about the Hypersomnia Foundation and our mission.

HF CO-SPONSORS CME/CE EDUCATION SYMPOSIUM

Working in partnership with Haymarket Medical Education, we were pleased to sponsor a complimentary accredited continuing education dinner symposium at the AASM SLEEP 2022 conference. The symposium, entitled “A New Dawn for Better Outcomes in Patients With Idiopathic Hypersomnia: New Data, New Guidance, New Treatments,” was an evidence-based panel discussion for sleep specialists, psychiatrists, neurologists, and advanced-practice clinicians.

HF RECEIVES “2022 SLEEP CHAMPION” AWARD

The Hypersomnia Foundation was honored to receive the American Academy of Sleep Medicine Foundation’s 2022 Sleep Champion Award in recognition of our educational outreach and mission-driven work for the sleep community. HF’s Board of Director's Chair accepted the award at a reception and ceremony held during the AASM SLEEP 2022 conference.

HELPFUL ONLINE RESOURCE LIST

On our website, we recently compiled a quick one-page reference list of the top resources for patients, healthcare providers, and researchers. Free to download, these can easily be shared with physicians, family members, and anyone needing further information about idiopathic hypersomnia and related sleep disorders.

WEBPAGE UPDATE

The Hypersomnia Foundation’s Medical Advisory Board updated our “Hormonal Therapy, Birth Control & Menstruation: Considerations for People with Hypersomnias” webpage to include testosterone treatment. Our goal with this update is to be able to provide individuals and their doctors with information to help make informed choices about birth control and hormonal therapy.

Over the past months, we have continued providing the following:

-- We have grown our hypersomnia-focused patient registry at CoRDS (Coordination of Rare Diseases at Sanford) to over 3,800 participants (from nearly 30 countries) creating a vital database for researchers to use as they work to better understand symptoms, treatments and the diagnostic journey of individuals suffering from rare sleep disorders. According to a publication from the Agency for Healthcare Research and Quality Research, “Patient-powered registries and patient-powered research networks offer new directions for patient-centered outcomes research and contribute to translational science in important ways. Experts agree that these registries are transforming patient/caregiver support and advocacy groups into research organizations. They also provide patients and family members another way to become engaged in research beyond the role of advisor or informant to researcher-generated studies.”

-- We continue to share important research and other news relating to sleep disorders via our free e-newsletter, SomnusNooze, to almost 5,000 subscribers.

-- We continue to collaborate with our Patient Advisory and Advocacy Council (PAAC), comprised of individuals with IH and related disorders (and their supporters), helping us stay informed about issues affecting the sleep disorder community.

-- We thank our Diversity, Equity and Inclusion (DEI) Task Force, a group of volunteers and HF Board members, who have been working to help HF better understand the barriers that many people face in getting a correct diagnosis of a sleep disorder. We continue to work diligently with this committee and holding listening sessions with our community as we work to incorporate DEI principles into everything we do.

-- We continue to produce educational videos from presentations made by our Medical and Scientific Advisory Boards, conference presenters, and experts in fields related to sleep medicine and provide free access to these videos through our website and YouTube channel.

-- We continue to expand our online International Healthcare Provider Directory of physicians experienced in the treatment of people with hypersomnias.

-- We continue to increase our Social Media outreach to 9,437 active followers, via Facebook, Instagram, Twitter and LinkedIn. Through these platforms, we actively share information about ongoing clinical trials, provide access to free resources for the sleep disorder community, promote community support groups, and encourage participation in local and national advocacy efforts to increase awareness of sleep disorders and funding for research and access to treatments.

-- We continue to expand our education and awareness outreach to family physicians, medical students and residents, school counselors, and nursing associations, by providing free materials and resources to better understand and support patients and students with sleep disorders. Available on our website, our resources include:

•  A series of downloadable Educational Guides for K-12 through college for students with IH and related sleep disorders, as well as their parents and school officials.
• The “HINT” test, a one-sheet for school counselors and family physicians to quickly recognize potential sleep disorders in students and patients.
• An Anesthesia Guide for people with IH to share with their medical teams before surgery, and a Patient Care Plan that can be individualized for each person.
• An IH-specific Medical ID Card that both alerts medical personnel that the person has IH and educates the medical personnel as to what IH is and how it can interact with anesthesia and other drugs.
• A Patient Self-Advocacy guide that provides tips and ideas on how to effectively advocate for the needs of those with a rare sleep disorder.
• The Idiopathic Hypersomnia Severity Scale - a questionnaire designed specifically to measure IH symptoms and serve as a useful tool for patient identification, follow-up visits, and IH management.

All people with hypersomnia deserve full and proper treatment. Optimal diagnosis and treatment derive from better knowledge and increased awareness. Your donations help us increase awareness of idiopathic hypersomnia through outreach, education and research.

IMAGES FROM OUR BEYOND SLEEPY 2022 CONFERENCE BELOW: