WSCN attends #BEYONDSLEEPY 2026

Hosted on June 13-14th 2026 by the Hypersomnia Foundation in Baltimore, Maryland, USA, #BeyondSleepy is an event designed specifically for individuals living with idiopathic hypersomnia, narcolepsy, and Klein-Levin Syndrome. The annual event provides education, research updates, networking, and community-building opportunities, bringing much-needed support to people living with these rare disorders, as well as their caregivers and clinicians. WSCN attended the event to connect with the community, elevate patient voices, and learn about how to further support the sleep and circadian ecosystem. 

We sent three staff members to host our booth, and provided funding for three patient advocates to attend the event: Kerly Bwoga, Rachel Nesmith, and Tara O’Connor.

Over the two days we enjoyed an array of touching conversations, deep learning, and some tough realisations about how difficult it can be to live with a hypersomnia disorder. It solidified WSCN’s passion for supporting patients in this space, and also for elevating their voices in research, medical education and policy making. We met some incredible clinicians and researchers who are working hard to advance treatment options for hypersomnia disorders, and felt uplifted by how much progress is being made.

We heard about how patients can effectively advocate for themselves in a keynote talk from our own WSCN Board Chair, Dr Anne Marie Morse. We also learned about how wearable technology and new pharmaceuticals are improving quality of life for people – with some exciting new advances in drugs called orexin agonists, which are due to enter the market soon. These drugs assist in restoring the sleep-wake rhythm for people with narcolepsy type 1 – helping them to maintain wakefulness during the day, as well as possibly helping with a cognitive symptom called brain fog. 

We loved witnessing our patient advocates at #BeyondSleepy – seeing them in action reinforced just how important our Scholarships and Patient Support Programs really are. Our three advocates spoke out in plenary sessions, networked with medical providers, joined important discussion groups, and spent time building community and sharing experiences – actions that are deeply impactful and essential for making positive change.

• There are exciting new pharmacological treatments for hypersomnia disorders that are improving people’s lives, including sodium oxybates and orexin agonists
• There is positive change in research and healthcare practice with increased awareness of rare sleep disorders like narcolepsy, Klein-Levin Syndrome and idiopathic hypersomnia
• Patient voices are being integrated into research more often
• Caregivers and family members lives are also impacted when living with someone with a hypersomnolence disorder – their experiences should be included in research
• Supportive community is essential for people living with rare disorders – having connection to people who understand and can share experience and wisdom is critical
• The average time from disease onset to diagnosis is still ~15 years, with misdiagnosis a common feature in most patient’s journeys
• Progress is rapid and encouraging, but there is still a long way to close the gaps in care
• Our network collaborators are making wonderful contributions in the hypersomnia space, we are proud to support them:
  • PWN4PWN
  • Naps4Life
  • Hypersomnia Foundation

• Hypersomnolence disorders are relatively rare, they cause significant disability and impact on the people living with these conditions
• The delay in getting a correct diagnosis is due to many factors, including the “invisibility” of hypersomnolence disorders, mis-labelling symptoms, lack of medical practitioner education and difficulty accessing clinical testing that is relevant and appropriate for this patient population
• WSCN will continue to support patient advocates through our support programs, so that patient voices are heard, understood and integrated into all aspects of healthcare – from policy, to research, and real-world practice
• There is a renewed hope for better quality of life with the development of targeted pharmaceutical therapies, and this will be supported best by ensuring that patient voices are integrated in all parts of research and policy making
• WSCN connected with several organizations who are making an impact in the hypersomnolence disorders space, and we are looking forward to following their work and creating meaningful network connections with them