ATLANTA--(BUSINESS WIRE)--The HYPERSOMNIA FOUNDATION (HF), a leading nonprofit patient advocacy group dedicated to improving the lives of people with idiopathic hypersomnia and other rare sleep disorders, will be holding a Hypersomnia Educational Meeting in Seattle, WA on June 29, 2019.
Idiopathic hypersomnia (IH) is a chronic neurological disorder characterized by an insatiable need to sleep (excessive daytime sleepiness). People with IH sleep normal or long amounts of time each night (often 11 hours or more per night), but still have difficulty waking up and struggle against persistent sleepiness throughout the day. Currently there are no FDA-approved treatments for IH, and persons with IH often suffer for many years before obtaining a correct diagnosis.
This June 29 event, the first-ever gathering hosted by the HF on the West Coast, will serve as a forum to connect persons with rare sleep disorders with leading researchers and patient advocates in the sleep medicine field. Dr. David B. Rye, MD, PhD, a Professor of Neurology at Emory University, and one of the world’s leading researchers in sleep medicine, will speak on recent research developments in the hypersomnia field. Dr. Flavia B. Consens, MD, an Associate Professor of Neurology at the University of Washington and a board-certified physician at the Sleep Medicine Center at UW-Harborview, will discuss treatment of hypersomnias from the doctor’s point of view.
Leading patient advocates, including Julie Flygare, President and CEO of Project Sleep, and Sarah Beazley, HF Board member, will lead discussions and a workshop on how persons with rare sleep disorders can obtain their best care and how they can help to accelerate research into better treatments for these disorders. Rebecca King, HF’s Legislative Advocate, will address her legislative efforts in breaking down insurance barriers and in reducing the high costs that prevent patients from obtaining their medications.
A leading clinical-stage pharmaceutical company, Balance Therapeutics, will also provide updates about their clinical trials involving novel therapies for rare sleep disorders. Morgan Lam, the CEO of Balance Therapeutics, and his team will be present to answer questions about their current clinical trial involving people with IH.
The Meeting will be held at the Seattle Airport Marriott, 3201 S. 176th Street, from 10 a.m.-3 p.m. on Saturday, June 29, and is open to the public. Tickets are $25 through Eventbrite, and include lunch. For more information, please contact the HF at Stephanie@HypersomniaFoundation.org.
