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.
The Down Syndrome Program at Boston Children’s Hospital was founded in 1967 and is one of the oldest and largest of its kind, offering multidisciplinary health care for individuals with Down syndrome from birth to age 22 years. They offer highly specialized medical services and provide individualized management of complex challenges for patients with Down syndrome through an interdisciplinary clinical approach. Their team works closely with expert subspecialists at Boston Children’s Hospital. They provide family support services and care coordination to meet the comprehensive needs of our patients. They have developed innovative practices, including extensive neurodevelopmental and behavioral assessments and carefully designed neuropsychological testing that allow us to target and individualize developmental therapies and educational interventions for our patients in order to optimize development.
Confidential prenatal consultations are provided in our Advanced Fetal Care Center for families who receive a confirmed or suspected prenatal diagnosis of Down syndrome. Consultation with genetics, cardiology including fetal echocardiogram, neurology, lactation support, and other subspecialists can be coordinated.
Their team provides a comprehensive interdisciplinary evaluation for babies and young children, using an interdisciplinary team approach. Each child spends a full morning in our clinic and has individual appointments with specialists in developmental behavioral pediatrics, nutrition, audiology, physical therapy, and speech language pathology with expertise in feeding and swallowing. Clinic visits for older children, adolescents, and young adults are customized, with consultation with a clinician in the Down syndrome program coordinated with same-day appointments for other subspecialty care such as orthodontics, audiology / ENT, cardiology, GI / nutrition, ophthalmology, sleep medicine, physical therapy, dentistry, nutrition, and others as needed.
Additional Supports: More than a Clinic
The Down Syndrome Program at Boston Children’s Hospital offers families supports beyond their clinics including expert intensive care coordination, resource specialist services, workshops, and support groups. They host the Allen C. Crocker Speaker Series which offers free presentations / webinars by experts in the field on more than 30 topics for families which are archived on our website and viewed by families and professionals nationally and internationally.
In partnership with the Laboratories for Cognitive Neuroscience and the Translational Neuroscience Center at Boston Children’s Hospital, The Down Syndrome Program at Boston Children’s Hospital 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 or initiate an appointment by calling 857-218-4329 or email Angela Lombardo. Meet their team here. You can also read more in their Program Brochure.
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.
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:
- Development/Behavioral Pediatrics
- Social Work
For more information or to schedule an appointment, call 774-443-UMDS (8637)
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.