Massachusetts is home to some of the best Down syndrome healthcare clinics in the world. Click on the links below for information about the area’s major specialty Down syndrome clinics/programs.

Boston Children’s Hospital Down Syndrome Program
MassGeneral Hospital Down Syndrome Program
Down Syndrome Center at UMass Memorial Children’s Medical Center
DSC2U (national)

Boston Children’s Hospital Down Syndrome Program

Founded in 1967, The Down Syndrome Program at Boston Children’s Hospital is one of the oldest and largest of its kind, providing highly specialized healthcare for individuals with Down syndrome from birth to age 22. Our team uses an interdisciplinary clinical approach to managing patients’ complex challenges by working closely with expert subspecialists at Boston Children’s Hospital. We have developed innovative and carefully designed behavioral, neurodevelopmental, and neuropsychological evaluation practices, which allow us to individualize therapies and educational interventions that optimize patients’ development. In addition, the program provides family support services and care coordination to meet the comprehensive needs of our patients.

Prenatal Consultations

Our Maternal Fetal Care Center provides confidential prenatal consultations for families who receive a confirmed or suspected prenatal diagnosis of Down syndrome. Consultation with genetics, cardiology, including fetal echocardiograms, neurology, lactation support, and other subspecialists can be coordinated.

Clinic Visits

Babies and young children under 2.5 years of age receive regular comprehensive evaluations from our interdisciplinary team. At each team visit, the child spends a full morning in our clinic, during which they attend individual appointments with specialists from developmental-behavioral pediatrics, audiology, physical therapy, and speech language pathology, with expertise in feeding and swallowing.

Children, adolescents, and young adults are followed over time by a developmental-behavioral pediatrician for comprehensive visits which address medical and developmental issues. The Down Syndrome Program’s interdisciplinary approach provides highly specialized medical services, including for complex medical care needs. The program offers specialized evaluation and treatment of neurodevelopmental, behavioral, and mental health conditions, such as Autism Spectrum Disorder (ASD), Attention-Deficit/Hyperactivity Disorder (ADHD), communication challenges, behavioral issues, and developmental regression.

Additional Supports: More than a Clinic

The Down Syndrome Program at Boston Children’s Hospital provides families with support beyond their clinic visits, including expert intensive care coordination, resource specialist services, workshops, and support groups. The Patient Resources page on our website includes resources such as informational guides, resource directories, and videos from the Allen C. Crocker Speaker Series, a collection of free webinars by experts in the field.

Research

In partnership with the Laboratories for Cognitive Neuroscience and the Translational Neuroscience Center at Boston Children’s Hospital, The Down Syndrome Program offers cutting-edge research dedicated to studying neurodevelopment in Down syndrome, co-occurring medical and neurodevelopmental conditions, and interventions to improve development, cognition, and overall health outcomes.

For more information

Visit Boston Children’s Hospital Down Syndrome Program, call 857-218-4329 or email their Program Coordinator. You can also read more in their Program Brochure.

MassGeneral Hospital Down Syndrome Program

In July 2012, Massachusetts General Hospital opened a comprehensive Down Syndrome Program, which integrates state-of-the-art resources with compassionate, comprehensive care through a multi-disciplinary approach. National experts from Massachusetts General Hospital, MassGeneral Hospital for Children, and Massachusetts Eye and Ear Infirmary help with any medical issue that may occur.

MGH’s Down Syndrome Program has four distinct clinics to ensure that people with Down syndrome receive the specialty care that is specific for their age group:

Adult Clinic (ages 21 and older)

Adults will be supported to lead healthy lives marked by meaningful engagements with their communities.

Infant and Toddler Clinic (ages birth-5)

Families will be educated about Down syndrome and comprehensive supports will be provided for their child’s early needs.

Child Clinic (ages 5-13)

The healthcare of children will be maximized so that they can achieve successes during school-aged years.

Adolescent and Young Adult Clinic (ages 13-21)

Families and youth will be supported and educated about transition planning. The goal is for your child to be prepared for adulthood and as engaged in their care as possible.

The program can also provide consultations in a private setting for expectant parents who have received a prenatal diagnosis of Down syndrome. See complete staff bios here. For more information and to make an appointment visit their website. Send emails with any questions to DownSyndrome@partners.org.

Down Syndrome Center at UMass Memorial Children’s Medical Center

UMass Memorial Children’s Medical Center’s Down Syndrome Program is a comprehensive, personalized, one-stop resource for children and their families. Program coordinator Gwen Roberts Sokoloff, BSN, RN, CCRN, maintains regular communication with families while managing all of their child’s appointments with medical specialists, community physicians and educators.

They service prenatal families and families of infants, children and young adults with Down syndrome, and offer specialists in the following:

  • Audiology
  • Cardiology
  • Dermatology
  • Development/Behavioral Pediatrics
  • Endocrinology
  • ENT
  • Gastroenterology
  • Genetics
  • Hematology/Oncology
  • Nutrition
  • Orthopedics
  • Psychiatry
  • Pulmonology
  • Social Work

For more information or to schedule an appointment, call 774-443-UMDS (8637)

DSC2U (national)

Over 95% of individuals with Down syndrome in the U.S. do not have access to a Down syndrome specialty clinic. Researchers at Massachusetts General Hospital and Harvard Medical School have now created “Down Syndrome Clinic to You” (DSC2U) as a way to bring the latest advances in health and wellness for people with Down syndrome directly to caregivers’ home computers. MDSC, which serves on the DSC2U Advisory Group, has played an important foundational role in its creation.

With DSC2U (dsc2u.org), caregivers complete an online intake form, where they identify current concerns about their son or daughter with Down syndrome. Their responses generate two personalized documents: a plan for caregivers and another one for the primary care providers of their sons/daughters.