Support Groups

Caregivers Need Support, Too

Taking care of a loved one affected by CDKL5 can feel isolating – you need someone who understands what you are going through. We find there is great healing in support groups where you can share experiences with others in the same situation. By sharing our stories, we provide comfort while passing on needed information, about everything from diagnosis and therapies to medications and research.

If you are a parent, relative, or caregiver of a child affected by CDKL5, and you would like to communicate with other families around the globe, there are several private Facebook groups that offer support.

Please note: These groups are independent of the IFCR; their moderators are not representatives of the IFCR.

CDKL5 Facebook Groups