KLS Medical Publications

Learn more about KLS

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.

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Help Us Find A Cure

KLS is a very rare syndrome affecting roughly 1000 people worldwide.

As a result there is very little incentive for researchers and pharmaceutical companies to invest in KLS research.

Please consider donating today! Contributions from individuals are critical to the ongoing success of the KLS Foundation’s efforts to educate, support families and find a cure for KLS.

Thank you for your support!

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Doctors Familiar with KLS

Get the Support you need

You may want to use this list as a starting point for your search for a doctor.  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. As you search for a health care professional, keep in mind that you have certain rights no matter who you are, what challenges you are facing, or how much money you have.  You have a right to: 

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Welcome, KLS Kickoff, KLSF BOD introductions – Steve Maier, KLSF President

Steve Maier, President of the KLS Foundation, kicks off the 2015 International Conference. See the PDF link and video below. PDF Link: KLS Foundation 2015 International Conference – Kickoff – Steve Maier KLSF President

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Kleine-Levin Syndrome Update 2015 – Professor Isabelle Arnulf PhD MD

Professor Isabelle Arnulf PhD MD, Keynote Speaker, provides a very comprehensive 2015 update on Kleine-Levin Syndrome to include: KLS diagnosis criteria, long episodes, brain functional imaging, long term cognitive functioning and treatments. See the PDF link and video below. PDF Link: Kleine-Levin Syndrome Update 2015 – Professor Isabelle Arnulf PhD MD ...

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KLS and Idiopathic Hypersomnia – Dr. David Rye, MD, Emory Clinic

Dr. David Rye, MD, special guest speaker, gives a talk about his research concerning Hypersomnia Conditions. Subjects include Kleine-Levin Syndrome, Idiopathic Hypersomnia, and Narcolepsy. See video below.

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Running For Ryan Fundraiser – Ann Blackmon

Ann Blackmon, special guest speaker, presents a check to the KLS Foundation in memory of Ryan McKinney and shares about the Running For Ryan Fundraiser. See video below.

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Global KLS Research Update – Dani Farber

Dani Farber, KLS Foundation Board Member, presents a global research update on KLS. See the PDF link and video below. PDF Link: KLS Research Update – Dani Farber & Neil Farber PhD

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KLS Support UK – Caron Krieger

Caron Krieger, KLS Foundation Board Member and Co-Founder of KLS Support UK, shares about how KLS Support UK came to be and it’s attained success. See the PDF link and video below. PDF Link: KLS Support UK – Caron Krieger KLSF BOD

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Social Security Disability Benefits – Sara G. Khaki

Sara G. Khaki, Esq., speaks about Social Security Disability Benefits and gives tips. See the PDF link and video below. PDF Link: Social Security Disability Benefits – Sara G. Khaki Esq

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Supportive Care Strategies and Working with Doctors – Gaylene Grossman

Gaylene Grossman, RN BSN CNOR, KLS Foundation Advisory Board Member, gives an informative presentation on Supportive care strategies, Medications and Working with doctors. See the PDF link and video below. PDF Link: Managing Your KLS Care – Gaylene Grossman RN BSN CNOR

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IDEA and Section 504 Education – Donna Reynolds

Donna Reynolds, South Side Education Advocates, talks about Education rights. See the PDF link and video below. PDF File: IDEA and Section 504 for your student – Donna Reynolds

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Parent Perspective – Lori Haller Schiller

Lori Haller Schiller, KLS Foundation Media Chair, shares the Parent Perspective. See the video below.

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