This initiative reflects Narcolepsy Network’s core mission: to listen, understand, and elevate the voices of those living with narcolepsy and IH. In addition to the collaboration with Takeda Pharmaceuticals, Cullari Global Communications, an independent stakeholder engagement firm, will design and facilitate the discussion in a safe space for patients to share their experiences without influence. The Listening Project sessions are intentionally designed to ensure authentic, patient-centered dialogue without promotional agendas.
The launch of the Listening Project signals a new approach for engaging the voices of the narcolepsy and IH community. Narcolepsy Network will manage the application process publicly and transparently, with the goal of engaging a diverse group of participants. This will include patients who have not previously had an opportunity to share their experiences, as well as a range of ages, geographies and time to diagnosis. Narcolepsy Network will maintain clear guardrails between the patient and corporate interests, based on its established policy of neutrality and does not endorse or align with any specific product or clinical trial.
Application Process
The application to participate opens to the public today, August 4, 2025 and closes September 5, 2025. Anyone diagnosed with NT1 is eligible to apply. Participants will be selected based on a mix of experiences, backgrounds, and demographics. All personal information will be secured and accessible only to members of the planning team who are authorized by Narcolepsy Network. Selected applicants will be notified by September 19, 2025, and travel expenses will be covered, including lodging on Thursday, October 23.
Participation in the Listening Session is separate from Narcolepsy Network’s 38th Annual Conference, which will take place that same weekend. Those interested in attending the conference must register separately. Scholarships are available for those who have a financial need.
For additional details, contact [email protected] or visit www.narcolepsynetwork.org. To apply, click here.
About Narcolepsy and IH
Narcolepsy and idiopathic hypersomnia (IH) are rare neurological sleep disorders that cause excessive daytime sleepiness (EDS) and disrupt daily life. Narcolepsy may also include sudden muscle weakness, sleep paralysis, and vivid dreams, while IH involves EDS, prolonged sleep and difficulty waking and staying awake, along with sleep inertia. Narcolepsy affects about 1 in 2,000 people in the U.S., with far fewer diagnosed with IH. However, both conditions are widely underrecognized, with studies showing up to 50% of people with narcolepsy—and an even higher percentage with IH —remain undiagnosed. You can read more about narcolepsy and IH here.
About Narcolepsy Network
Founded in 1986, Narcolepsy Network is a 501(c)(3) nonprofit supporting people with narcolepsy, idiopathic hypersomnia, and related sleep disorders through education, advocacy, support, and community-building.
To register or learn more about the Annual Conference visit: http://narcolepsyconference.org.
Media Contact
Jennifer Fugel, Narcolepsy Network, 1 8453000633, [email protected], https://narcolepsynetwork.org/
SOURCE Narcolepsy Network
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