“The Kleine-Levin Syndrome Foundation today announced updated diagnostic criteria for Kleine-Levin Syndrome (KLS) published in the International Classification of Sleep Disorders Third Edition (ICSD-3), the leading resource for diagnosing sleep disorders distributed by the American Academy of Sleep Medicine (AASM). The updated information about KLS in the ICSD-3 is based in large part on medical research funded by the KLS Foundation.”
“The Kleine-Levin Syndrome Foundation today honors Rare Disease Day by calling for the inclusion of Kleine-Levin Syndrome (KLS) in the National Institutes of Health (NIH) biennial ‘Sleep Research Plan.’ Including KLS in this publication and action plan will help build interest and funding for clinical research about this extremely rare disorder.”
UPDATE: Thanks to KLS advocates, the KLS Foundation’s first legislative advocacy campaign was a huge success: The U.S. House of Representatives included in its Labor, Health, and Human Services Appropriations bill for 2023 a formal request that KLS be included in the next National Institutes of Health (NIH) Sleep Research Plan. This will help secure attention and research funding to bring us closer to a cause and a cure. Check out page 106 of the bill! The KLS Foundation is grateful to U.S. Representative Mondaire Jones for his leadership along with U.S. Senator Chris Van Hollen, and to Rep. Jamie Raskin, Rep. Zoe Lofgren, Rep. Peter Welch, Rep. Mikie Sherill, Rep. Donald Norcross, and Rep. Jamaal Bowman for their support.