One in One Million People Worldwide Live With KLS

The cause and cure remain a mystery. We need your help to solve them.

Kleine-Levin Syndrome

KLS is an ultra-rare and complex neurological disorder characterized by recurring periods of excessive amounts of sleep, altered behavior, and “derealization” – a reduced understanding of the world. In an episode, a patient sleeps for most of the day and night, sometimes waking only to eat or use the bathroom.

KLS SUPPORT GROUP

The KLS Foundation hosts a group on Facebook where patients and caregivers can share their stories, seek advice, and offer support to one another.

NEW KLS PATIENT REGISTRY

The KLS Foundation partnered with public health research firm Beneufit to create a patient registry that accelerates 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 to further the Foundation’s ability to support both patients and physicians, and a research database to support scientific research and disease understanding.

Every piece of data you provide helps KLS patients and their families searching for answers, informs the doctors we look to for knowledgeable care, and furthers research to understand KLS.

All patient information is 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.

In the news

Thank you to Joe Dombrowski and KLS Foundation Board Member Arielle Poleg for sharing your KLS stories with NPR and “This American Life.”

$478,031.65
Donated to KLS Research

$9 out of $10 raised goes to support scientific research to find effective treatments and ultimately a cure for KLS.

Participate in KLS Research

Every participant’s data can help unlock new information about KLS.

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:

View Handout

KLS Foundation Mission

The mission of the Kleine-Levin Syndrome Foundation is to build awareness of KLS, offer support for our community of KLS patients and caregivers, and drive the search for a cause and a cure for KLS.

Foundation goals

• Fund medical research
• Increase physician awareness
• Provide information and support to patients and families
• Organize a KLS Conference

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.

Read more

Doctors Familiar with KLS

Finding a doctor or other health professional that is right for you is a personal process that can take time.

It is important to find someone you feel you can speak with openly and honestly. Even if your doctor does not know much about Kleine-Levin Syndrome (KLS), he or she should take the time to learn about it.

Read more

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.

you can help those living with kls

Contributions from individuals assist in maintaining the ongoing success of the KLS Foundation’s efforts to educate, support and find a cure for KLS.

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