West Palm Beach, FL — November 26, 2024 – The Sleep Consortium, in collaboration with a coalition of partner organizations and sponsors, is pleased to announce the Illuminate Hypersomnia Adjunct Scientific Meeting, scheduled for February 13, 2025, from 12:00 – 2:00 p.m. EST. This virtual scientific session aims to address critical challenges in drug development for idiopathic hypersomnia (IH), as identified during the groundbreaking Illuminate Hypersomnia Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting held on April 11, 2024.
The Illuminate Hypersomnia Adjunct Scientific Meeting will bring together experts in the fields of sleep medicine, pharmaceutical research, regulatory science, medical affairs, and patient advocacy. The focus will be on collaborative efforts to overcome key hurdles in the development of effective treatments for IH, a rare chronic neurological disorder characterized by excessive daytime sleepiness (EDS, or hypersomnolence), extreme difficulty waking, abnormally long nocturnal sleep, unrefreshing naps, and autonomic and cognitive symptoms.
Meeting topics are drawn directly from the Illuminate Hypersomnia Voice of the Patient report, based on extensive feedback collected through the EL-PFDD meeting and a detailed survey that attracted 811 responses from people living in 21 countries. Registration for the scientific meeting is now open to all, and the agenda features leading global experts in the field.
Key discussion areas include:
– Close examination of “brain fog,” a disabling symptom of IH that persists beyond the transition from sleep to alertness (sleep inertia)
– Definition of approaches to better defining and measuring brain fog in IH studies and clinical trials
– Review of barriers to participation in IH research studies
– Generation of considerations for recruiting and retaining people with IH in research studies
– Discussion of approaches to address unmet needs to advance the field and improve patient outcomes
“The April 2024 EL-PFDD meeting and survey attracted hundreds of individuals with IH, caregivers, and advocates to share their experiences, treatment priorities, and the unmet medical needs within the IH community. Their testimonies underscored the urgent need for accelerated research and innovation to bring new therapies to market,” said Sleep Consortium Co-founder and CEO Lindsay Jesteadt. “Our goal with this adjunct meeting is to leverage the momentum from that event and bring together the scientific community to focus on translating those patient perspectives into tangible advancements in drug development and care.”
Alliance partners that helped to launch the Illuminate Hypersomnia initiative are: Associação Brasileira de Narcolepsia e Hipersonia Idiopática, Damm Good Sleep, Days4Naps, European Narcolepsy Alliance for Patients, Hypersomnia Alliance, Hypersomnia Foundation, Hypersomnolence Australia, Hypersomnolence Support Network Japan, NapsForLife Ltd., Project Sleep, and PWN4PWN. Sleep Consortium is grateful to the companies that provided unrestricted educational grants to support the Adjunct Scientific Meeting in addition to the broader Illuminate Hypersomnia initiative: Alkermes, Avadel Pharmaceuticals, Centessa Pharmaceuticals, Harmony Biosciences, Jazz Pharmaceuticals, Takeda, and Zevra Therapeutics.
**Registration and Additional Information:**
The Illuminate Hypersomnia Adjunct Scientific Meeting will be held virtually, offering people from around the world the opportunity to participate at no charge from the convenience of their offices or homes. For more details and to register, please visit sleepconsortium.org/IH-ASM/
**About the Sleep Consortium:**
Le Consortium du sommeil est une organisation enregistrée à but non lucratif qui se consacre à l'avancement de la recherche, de la compréhension et du traitement des troubles centraux de l'hypersomnolence, y compris l'hypersomnie idiopathique. Grâce à des efforts de collaboration et à une recherche innovante, le Consortium vise à améliorer la vie des personnes touchées par ces troubles rares et difficiles.
**CONTACT MÉDIA:**
Lindsay Jesteadt, PhD
Co-fondateur et PDG, Sleep Consortium
Courriel : PFDD@sleepconsortium.org
Website: www.sleepconsortium.org
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