The Sleep Consortium, in collaboration with sleep-related patient advocacy organizations worldwide, has launched the Illuminate Hypersomnia initiative, an effort to highlight the lived experience of idiopathic hypersomnia (IH). 

The initiative aims to fully describe the impact of IH on the lives of those affected, their current management strategies, and the treatment benefits that matter most to them as new therapies are developed.

On April 11, 2024, from 12 to 4 pm ET, the Illuminate Hypersomnia initiative will host an externally led virtual patient-focused drug development (PFDD) meeting, conducted as a parallel effort to the US Food and Drug Administration’s PFDD initiative. The meeting will be streamed live, bringing members of the global IH community together to share their experiences and perspectives. Additionally, a PFDD survey will be conducted in early 2024 to ensure a comprehensive understanding of the challenges faced by as many people with IH as possible. 

A “Voice of the Patient” report will summarize insights gathered from the PFDD meeting and survey, creating a resource for researchers, drug development sponsors, regulators, healthcare professionals, and others.

The Illuminate Hypersomnia initiative also aims to expand collaboration and support within the IH community to help individuals learn from and empower one another. Partner organizations include Associação Brasileira de Narcolepsia e Hipersonia Idiopática, Damm Good Sleep, Days4Naps, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, Project Sleep, and PWN4PWN.

“Our mission with the Illuminate Hypersomnia initiative is clear: bring to light the hidden struggles of idiopathic hypersomnia and unite in the quest for better treatments,” says CEO of Sleep Consortium Lindsay Jesteadt, PhD, in a release. “We are fully committed to empowering the IH community, fostering collaboration, and driving innovation for a future where those affected can experience the full vibrancy of life without the weight of constant fatigue.”

Organizations supporting the Illuminate Hypersomnia initiative with educational grants include Alkermes, Avadel Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda, and Zevra Therapeutics.

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