Down syndrome Resources
This page provides Down syndrome resources for parents, caregivers, and individuals seeking support, education, and community connection. It includes local and national Down syndrome organizations, developmental and educational supports, and resources for families navigating a new or existing Down syndrome diagnosis. Whether you are an expecting parent, a caregiver, or an adult with Down syndrome, these resources are intended to support you across the lifespan.
Medical & Support Services
Maintain open communication with your pediatrician and/or developmental pediatrician to monitor development and overall health
Utilize early intervention programs (speech, occupational, and physical therapy services) as recommended
Engage in genetic counseling to better understand diagnosis and support future family planning if desired
Connect with Down syndrome clinics for coordinated, multidisciplinary care as available
Access community-based disability support services for case management, respite care and family support programs
Seek out parent and caregiver support organizations and local advocacy groups for education, connection and resources
When to Seek Help
It can be helpful to reach out for additional support if you are feeling overwhelmed by medical appointments, unsure how to navigate early intervention services, or struggling to process your child’s diagnosis emotionally. Many parents also seek support when they notice increased stress, anxiety, or difficulty adjusting to new caregiving demands. Reaching out early—whether to medical providers, therapists, or parent support organizations—can help you feel more grounded, informed, and supported as you move forward.
Down syndrome Resources:
Massachusetts
Boston Children’s Hospital Down syndrome Program
Resources for expectant and new parents, including educational and health information, information on the condition, how to share the diagnosis and health care guidelines for individuals with Down syndrome. BCH Down syndrome program also hosts the first call program for expecting parents.
https://www.childrenshospital.org/conditions-treatments/down-syndrome
Massachusetts General Hospital Down syndrome Program
Provides a multidisciplinary lifespan approach at four clinics serving individuals of all ages with Down syndrome.
https://www.massgeneral.org/children/down-syndrome/
DSC2U
DSC2U is part of Mass General Brigham, a nonprofit healthcare system. DSC2U is on a mission to make high-quality healthcare guidance accessible to all. User fees support the operational costs that keep this critical resource available to families everywhere.
https://www.dsc2u.org
UMASS Memorial Children’s Medical Center Down syndrome Program
A comprehensive, personalized, one-stop multidisciplinary center for infants, children and adolescents with Down syndrome, serving children and families in Central and western Massachusetts.
https://www.ummhealth.org/services-treatments/childrens-medical-center/genetics/down-syndrome-program
Massachusetts Down Syndrome Congress
https://mdsc.org
The Arc of Massachusetts
A leading nonprofit organization that advocates for and supports individuals with intellectual and developmental disabilities (IDD) and their families. There are locations throughout the Commonwealth.
https://thearcofmass.org
Down syndrome Resources:
National
Adult Down syndrome Center - Illinois
Serves the physical, mental, and social health needs of thousands of teens and adults with Down syndrome.
https://adultdownsyndrome.org
National Down syndrome Congress
A US-based, non-profit organization dedicated to providing support, information and advocacy to individuals with Down syndrome, their families and professionals. It works to ensure individuals with Down syndrome have equal rights, opportunities, and inclusion in all community aspects
https://ndsccenter.org
National Down syndrome Society
A leading American human rights organization supporting individuals with DS, their families and caregivers. It drives policy change, provides resources, and facilitates research to empower the community and improve public perception.
https://ndss.org
Gigi’s Playhouse - California founded
We make a lifetime commitment to changing lives and providing hope through the consistent delivery of FREE educational, therapeutic, and career development programs for individuals with Down syndrome, their families, and the community, using a replicable playhouse model.
https://gigisplayhouse.org
PALS Programs - Nationwide
PALS Programs creates inclusive camp experiences for people with and without Down syndrome. Our volunteer-led programs change attitudes, transform lives, and inspire a world of belonging.
https://www.palsprograms.org
Global Down syndrome Foundation
A public non-profit 501(c)(3) dedicated to significantly improving the lives of people with Down syndrome through Research, Medical Care, Education and Advocacy.
https://www.globaldownsyndrome.org/about-down-syndrome/resources/national-down-syndrome-organizations-2/