Accelerating Global Research and Therapeutics in Central Disorders of Hypersomnolence and Related Diseases
About Sleep Consortium
Sleep Consortium is a registered not-for profit (501(c)(3)) organization created to accelerate next generation research, disease understanding and therapy development for those living with Central Disorders of Hypersomnolence (CDoH) and related diseases.
Sharing patient owned information by participating in the sleep data collection program is one of the most important things that you can do to make a difference.
The primary challenge influencing the speed and productivity of innovation in rare disease is cost and the lack of reliable or open access to comprehensive patient data.
The sleep consortium takes a bold new approach to sleep research putting the patient in the center of its efforts. This initiative demands that the patient be the driver of new research considerations, have ownership of their own data, and serve as an invaluable partner to researchers internationally. This novel approach will leverage advanced technologies to further our understanding of sleep wake disorders by starting with the debilitating symptom of excessive daytime sleepiness and identify all the faces of patients who are suffering with it to better define the roads that lead to the development, consequence and association with excessive daytime sleepiness.
Anne Marie Morse, Director of Child Neurology and Pediatric Sleep Medicine, Geisinger, Janet Weis Children’s Hospital
Unraveling the mysteries of narcolepsy and accelerating transformational research will require sophisticated technology and good-old-fashion teamwork. This is why I believe the Sleep Consortium’s new patient data collection platform is poised to become a critical driver for learnings, advancements, and patient-centered progress to improve countless lives.Julie Flygare, President and CEO Project Sleep
This initiative goes beyond the simple data repository approach to create a platform for innovation, collaboration, and patient engagement unlike anything else. It takes a 21st-century approach to an issue that impacts a wide range of people in many profound ways.Michael Grandner, Director, Sleep and Health Research Program, University of Arizona
The Sleep Consortium’s vision of a precompetitive data sharing collaborative is groundbreaking. RARE-X is honored to support this progressive thinking, which will truly accelerate our understanding of sleep disorders, as well as therapy development. RARE-X is proud to collaborate with the Sleep Consortium to create a foundational architecture for data collection in the sleep space.Charlene Son Rigby, CEO RARE-X