If you are a parent, relative, or caregiver of a child who has been diagnosed with a CDKL5 Deficiency Disorder and you would like to communicate with other families in Canada, there is an online support group available. The families in these 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.
Support Groups on Facebook
-
- CDKL5 Quebec