Resources
As we learn more about CDKL5 disorders, 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 Voluntary Work Association (Italy) – www.cdkl5.org
National Organization for Rare Disorders (NORD) – www.rarediseases.org
National Institute of Health - www.nih.gov
National Institute of Neurological Disorders and Stroke - www.ninds.nih.gov
NIH Office of Rare Diseases - http://rarediseases.info.nih.gov
Children's Rare Disease Network - www.crdnetwork.org
National Institute of Child Health and Human Development - www.nichd.nih.gov
The Association of Genetic Support Australasia - http://www.agsa-geneticsupport.org.au/home
Epilepsy, Infantile Spasms, West Syndrome - www.epilepsyfoundation.org; http://www.epilepsysociety.org.uk/Homepage; www.paceusa.org
Rett Syndrome and Atypical Rett Syndrome – www.rettsyndrome.org; www.rsrt.org; http://www.rettuk.org/rettuk-public/rettuk.html
Autism – www.autismspeaks.org; www.nationalautismassociation.org
Lennox-Gastaut Syndrome – www.lgsfoundation.org