Support Group
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 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.
To join the international online support group, please visit
http://uk.groups.yahoo.com/group/cdkl5/
There is also a closed Facebook support group. Please search 'CDKL5 Parents Support Group'.