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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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Support Group

If you are a parent, relative, or caregiver of a child who has been diagnosed with a CDKL5 mutation, and you would like to communicate with other families around the globe, there are several online support groups available. The families in these support groups recognize the immeasurable value of communicating and sharing experiences. By sharing our stories, we pass on information relating to the diagnosis, treatments, medications and research. The families in the group provide comfort, support, strength and love when you need them most.
 

There are several closed support groups on Facebook that offer family support. *Please note: these support groups are independent of the IFCR; the moderators are not representatives of the IFCR

 

CDKL5 Parent Support Group: www.facebook.com/groups/CDKL5

Dads: www.facebook.com/groups/CDKL5Dads

Siblings: www.facebook.com/groups/113270982090227/

Parents of Boys affected by CDKl5: www.facebook.com/groups/252670738135400/

 

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