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