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Glyn's Gift

The beginnings of CDKL5
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Natural History Study

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iPS Disease Modeling and Drug Development in CDKL5

Dr. Muotri will attend the IFCR Science Symposium to be held in the Chicago, IL, area in June. He has ... Learn More

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As we learn more about CDKL5, we find that there is an array of ways that this gene mutation presents itself. Some features are closely associated with other neurological disorders, such as Rett Syndrome (RTT), Infantile Spasms(ISSX), West Syndrome, Lennox-Gastaut (LGS), Early onset Epilepsy of Infancy, and Autism. 

We have included links to other websites where you can go to learn more about your child’s seizures and other related disorders.

CDKL5 Supporting Organizations

Caley J. Brown Foundation

Supporting CDKL5


CDKL5 Netherlands

CDKL5 Netherlands Community

CDKL5 Canada

Associazione CDKL5

 L'Albero di Greta ONLUS - Associazione Italiana CDKL5

CDKL5 Japan


Rare Disease Networks and Genetic Support

National Organization for Rare Disorders (NORD)

National Institute of Health (NIH) 

National Institute of Neurological Disorders and Stroke

NIH Office of Rare Diseases

Global Genes Project

National Institute of Child Health and Human Development

The Association of Genetic Support Australasia (AGSA)

Genetic Alliance

Invitae Diagnostic Testing Panel


Epilepsy, Infantile Spasms, West Syndrome

Epilepsy Foundation

Epilepsy Society (UK)

CURE: Citizens United for Research in Epilepsy

People Against Childhood Epilepsy (PACE)


Rett Syndrome and Rett Related Disorders

Rett Syndrome Research Trust

Rocky Mountain Rett Association (RMRA)

Rett UK

International FOXG1Foundation

MECP2 Duplication Syndrome



Autism Speaks 

National Autism Association   


Lennox-Gastaut Syndrome (LGS)

LGS Foundation 




Epilepsy Therapy Project's mission is to accelerate ideas into new therapies for people with epilepsy and seizures. In 2003, ETP launched; a dynamic online resource whose mission is to inform and empower people with epilepsy and families facing newly diagnosed epilepsy, or those struggling with epilepsy that has resisted the usual treatments. has developed into the leading online resource worldwide for information about epilepsy, seizures and treatments both available and in the development pipeline.

© 2017