Down syndrome Groups on Facebook (That Can Change Your Life)

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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

IDEA and IEP Tips

Coalition of Progressive Mothers of Children with Special Needs

International Alliance of Writers for Down Syndrome

IDSC Connections

IDSC Siblings

IDSC Pre-K Elementary

DSDN Private FB Group

Down Syndrome Potty Training

IDSC Business/Employment Discussion Page

Parents of Children with Down Syndrome

Special Needs Community

Down syndrome Mommies

Trach Kids with Down syndrome

Down syndrome Autism Connection

Down Syndrome

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

NDSC Annual Convention Group

Trisomy Families

Down Syndrome Prayers and Support

Our Adventures with Down Syndrome

Down Syndrome Single Mommies

Down Syndrome Awareness

Future of Down’s

A Little Something Extra!

Designer Genes: Down Syndrome Personalized

Down Syndrome News

Speech Therapy Ideas

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

I Am Who I Am

This Ability Special Needs Family Support

DS Families

Down Syndrome Research Foundation

Down Syndrome Parents

Inclusion for Children with Down Syndrome

World Down Syndrome Day

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

Down Syndrome Self Advocates

Tips for Special Needs at Disney

Parents of Tweens/Teens/Adults with Down Syndrome

321 Pregnancy Care (Australian Group)

The Road We’ve Shared

Behavior Intervention for Children with Down Syndrome

Down syndrome Neuro Development and Supplements Conversations

T21 LGTB Families

Down’s Heart Group

Breastfeeding & Down Syndrome

Canadian Down Syndrome Support: Awareness, Pride


(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.


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

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  1. Blanca Paredes says:

    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.

    1. Awesome!! What’s the link to the breastfeeding group? xoxo

  2. Janet Sides says:

    This is a FANTASTIC resource list! I shared it with several froups. Thanks for putting it together.

  3. 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


    1. lori sanderson says:

      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?


      Lori S., LCSW, MPH, PhD
      Licensed Clinical Nephrology Social Worker

  4. 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!

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