Facebook Support Group - This is currently the most active support group. It is a very close group of parents/caregivers and those close to an individual with 1p36 Deletion Syndrome. Due to the nature of the group, private, personal and emotional issues are often discussed. Because of this the goup has chosen to keep the group closed and will only accept “verified” members. There are several ways you may become a verified member. This support group was started by one of our family members and is not an official part of 1p36 Deletion Support & Awareness.
Facebook 1p36 DSA Organization site - The 1p36 Deletion Support & Awareness Facebook site is where you can get information about what is going on with the organization as well as post questions directly to the official 1p36 DSA non-profit.
Yahoo Health 1p36 Message Board - This site is the original parent/caregiver support group started by parents of children with 1p36 Deletion Syndrome. Although the site is not very active at this time you may still join and it is a good place to search for questions and answers that have been asked in the past.
1p36 Deletion Syndrome Family Blogs - A list of blogs that different family members have created about their loved ones with 1p36 Deletion Syndrome. We list these blogs so that other families and caregivers can get an insight into the lives of those living with 1p36 Deletion Syndrome.