CDKL5:
- International Foundation for CDKL5 Research
- Parent support group for those who have children or an immediate family member diagnosed with CDKL5 (Membership requires permission-please message group admin)
- CDKL5 Legacies Support Group: For those parents/immediate family members who have a child diagnosed with CDKL5 who have passed away
- CDKL5 Info: This page is geared towards parents of children diagnosed with CDKL5
- CDKL5 UK
- German CDKL5 Forum
- CDKL5 Canada Facebook
- CDKL5 Canada
- Ketogenic Diet: Epilepsy Foundation
- Ketogenic Diet: Epilepsy Society
- Modified Atkins Diet: Epilepsy Foundation
- Low Glycemic Index Treatment (LGIT): Epilepsy Foundation
- CURE Epilepsy: Citizens United for Research in Epilepsy
- My Epilepsy Story
- Purple Day: March 26
- American Epilepsy Society
- American Academy of Neurology
- SUDEP Aware: Sudden Unexplained Death of Epilepsy
- The Charlie Foundation: An organization started in 1994 to provide information about diet therapies for people with epilepsy
- Danny Did Foundation: the Danny Did Foundation works toward its mission to prevent deaths caused by seizures with these main goals in mind: advancing public awareness of Sudden Unexpected Death in Epilepsy (SUDEP), enhancing the SUDEP communication model between medical professionals and families afflicted by seizures, and the mainstreaming of seizure detection and prediction devices that may assist in preventing seizure-related deaths
- Chelsea Hutchison Foundation: is a non-profit corporation formed to provide help and support to individuals, particularly children and young adults, who have epilepsy
Tools for caregivers:
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