These useful KLS links have been helpful to me when researching Kleine Levin Syndrome. I hope they will be helpful to you as well.
Organizations
The Kleine Levin Syndrome Foundataion
National Organization of Rare Diseases
Doctors
Dr Isabelle Arnulf (French)
Studies
Stanford KLS study – Currently recruiting
Kleine-Levin syndrome: a systematic review of 186 cases in the literature.
Long term cognitive deficits in Klein Levin Syndrome.
Social Media
Quora.com Hypersomnia space This is a space that my wife and I curate for information about hypersomnia, including science and personal experiences about Kleine Levin Syndrome, narcolepsy and Idiopathic Hypersomnia (IH).
KLS Foundation private support Faccebook group.
Hypersomnia Spectrum Group on Facebook
Other First Hand Accounts of Families with KLS
KleineLevinSyndrome.co.uk is one of the best firsthand accounts of what it’s like to live with a child who has KLS. The logging information and the videos are very informative and tragically very familiar to what we experienced.