This is a list-post of Down syndrome groups that are on Facebook.
Some of the groups are public, some private, and some secret, and are categorized as such.
Down syndrome Groups on Facebook
There are a plethora of Down syndrome groups on Facebook.
There are groups for IEP help, education, conferences, connections, blogs, for siblings of people with Down syndrome. There are groups for grandparents of people with Down syndrome, heck; there’s probably a group for people who have a loved one with Down syndrome and prefer pink water bottles!
Facebook is a major source of connection for parents within the Down syndrome community. Unfortunately, many of the groups in the Down syndrome community have had to become “secret” because of internet trolls.
That means that I might link to them here, but if you go searching for a secret group, you won’t find it (more on how to join a secret group on Facebook is linked here).
The groups that I will link to below are primarily closed groups, which means that you will need admin permission to join.
Here we go!
Down Syndrome Diagnosis Network – huge network, birth clubs, larger specific-subject groups too
CAPOD (California Parents of Down Syndrome)
KIDS – Keep Infants with Down Syndrome
(which means that these groups exist, but you’ll need to search and have a connection to get in)
Hormone Deficiency in Down Syndrome
Down Syndrome Action Group
Trisomy 21 Research
T21 Online Group
Down Syndrome Research and Treatment Foundation-DSRTF
Parents of Teens and Up With Down Syndrome
I hope you find groups on this list that will help support you.
Remember that not all the groups are as awesome as others, so keep trying until you find the people that resonate with you.
One thing that I can testify to is that the connections that we make in these groups are real and life-changing.
They are family that we choose, and they can make a real difference in our ability to support and nurture our children with Down syndrome, and our ability to support and nurture ourselves through the process of parenting an individual with Down syndrome.
Note: this post was updated from one originally posted in 2014. If you know of groups that should be added, please link in the comments! Thanks
Meriah Nichols is a counselor. Solo mom to 3 (one with Down syndrome, one on the spectrum). Deaf, and neurodiverse herself, she’s a gardening nerd who loves cats, Star Trek, and takes her coffee hot and black.