One in a million people worldwide live with KLS
As a result there is very little incentive for researchers and pharmaceutical companies to invest in KLS research.
KLS is a rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and a reduced understanding of the world where the patient becomes progressively drowsy and sleeps for most of the day and night, sometimes waking only to eat or use the bathroom.
The KLS Foundation partnered with public health research firm Beneufit to create a patient registry that will accelerate our collective understanding and treatment of KLS. The registry serves the dual purposes of being a contact database to maintain an accurate list of KLS patients, families and doctors—which will further the Foundation’s ability to support both patients and physicians; and a research database to support scientific research and disease understanding by collecting medical histories and specific disease information.
All patient information will be kept confidential in accordance with HIPAA laws. The KLS patient registry has been approved by a U.S. Institutional Review Board (IRB) and is compliant under the European General Data Protection Regulation (GDPR). The registry was developed and launched with funding raised from individual donors to the KLS Foundation.
$478,031.65 Donated to KLS Research
KLS is a very rare syndrome with no known cause or cure. Our goals are to raise awareness, support scientific research, to find effective treatment and ultimately a cure for Kleine-Levin Syndrome.
Awareness of Kleine-Levin Syndrome (KLS) is very low. One of the ways you can help change that is by printing out the KLS brochure and sharing it with your community, friends, family, and health care professionals.
Click on the link below to print the KLS brochure:
KLS PATIENT HANDOUT
Awareness of Kleine-Levin Syndrome is very low. One of the ways you can help change that is by printing out the KLS handout and sharing it with your community, friends, family, and health care professionals.
Click on the link below to print your handout:
research & community
The KLS Foundation provides information and support to those diagnosed with KLS and their families. The Foundation exchanges information with patients and the medical community to help in the diagnosis and care of those affected by KLS, and supports research programs.
KLS Medical publications
Most published articles on KLS in the medical and scientific literature are reports of one or two KLS cases by an attending physician. While helpful in confirming and sometimes reporting new observations, these ‘case reports’ usually do not significantly contribute to a better understanding of KLS.
In the last few years, there have been a few more informative studies and review articles based on observations and conclusions from a larger cohort of KLS cases.
Doctors Familiar with KLS
Finding a doctor or other health professional that is right for you is a personal process that can take time.
Please consider donating today!
Kleine-Levin Syndrome Foundation, Inc. is a 501(3)c non-profit organization and all contributions are tax deductible. All funds go directly to support KLS Foundation projects.