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
Down Syndrome Diagnosis Network Additional Resources
Communication Issues for Kids with Down Syndrome
Coalition of Progressive Mothers of Children with Special Needs
International Alliance of Writers for Down Syndrome
IDSC Business/Employment Discussion Page
Parents of Children with Down Syndrome
Down syndrome Autism Connection
Grandparents and Grandkids with Down syndrome
Homeschooling and Down syndrome
Educational Strategies for Children with Down Syndrome
Modifying Curriculum for Individuals with Down Syndrome
Special Kids Equipment: Exploring the Minefield
Down Syndrome Prayers and Support
Our Adventures with Down Syndrome
Designer Genes: Down Syndrome Personalized
CAPOD (California Parents of Down Syndrome)
KIDS – Keep Infants with Down Syndrome
Down Syndrome Usborne Book Drives and Fairs
The Real Truth About Down Syndrome
This Ability Special Needs Family Support
Down Syndrome Research Foundation
Inclusion for Children with Down Syndrome
World Down Syndrome Day: Random Acts of Kindness
Disability and Special Needs Awareness
Down syndrome Medical Educate and Share for Ds Parents
Facebook: Stop Allowing Groups that Mock Special Needs and Disability
Tips for Special Needs at Disney
Parents of Tweens/Teens/Adults with Down Syndrome
321 Pregnancy Care (Australian Group)
Behavior Intervention for Children with Down Syndrome
Down syndrome Neuro Development and Supplements Conversations
Canadian Down Syndrome Support: Awareness, Pride
Secret:
(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 Brigade
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.
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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.
There is a Canadian group on FB https://www.facebook.com/groups/CDSPC/
thanks, Johanna!
https://www.facebook.com/groups/606931312836183/ My support group
Really great list! I just requested to join the homeschooling one. Another great closed group I’m apart of is one for Breastfeeding. I found a lot of info online to be old and not comprehensive. Kind of thinking of joining the writing group. Maybe someday I’ll write something related to breastfeeding a baby/toddler with down syndrome.
The group has really filled the gaps and given me encouragement. There are a couple of la leche league leaders and lots of parents with good information.
https://www.facebook.com/groups/breastfeedingchildrenwithdownsyndromegroup/
Awesome!! What’s the link to the breastfeeding group? xoxo
This is a FANTASTIC resource list! I shared it with several froups. Thanks for putting it together.
Hi, I admin the World Down Syndrome Day group on Facebook, so thanks for the mention, we are growing daily. I’d also like to flag up another group I am involved with, Down’s Heart Group – we offer support and information relating to the heart conditions associated with Down Syndrome. As well as our website we have a Facebook page and a closed group
https://www.facebook.com/groups/DownsHeartGroup/
Thanks
Thanks for those links, Penny!
Hi Penny,
I was just wondering if your Down Syndrome Heart Group is also available in Spanish. If not, do you know any Facebook groups that are?
Sincerely,
Lori S., LCSW, MPH, PhD
Licensed Clinical Nephrology Social Worker
The Down syndrome Diagnosis Network is on facebook and was an invaluable resource for me when we received our diagnosis. We connected with brand new moms in the same exact boat and same timeframe and age as our child. They have sub-groups on facebook that you can join too, for birth year, specific needs, and hold an annual “new mom” retreat!
Hi!
I am a Mom with a son with DS and I also run a group for Moms. I am also a Cert Wellness Coach and I support moms to Stress and Anxious Feelings.
Our group is called – Grateful Wellness for Special Needs Moms – link below.
I will also be hosting events in various locations during 2020.
https://www.facebook.com/groups/1878527382442622/?ref=share