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 in Canada, there is an online support group available. The families in this support group 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.
The support group is a closed Facebook support group. Please search for "CDKL5 Canada Family Support Group" on Facebook. Show your support by liking our facebook page CDKL5 Canada and follow us on Twitter @CDKL5Cad