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Down Syndrome Program

The Mass General Hospital Down Syndrome Program provides state-of-the-art care by a multidisciplinary team of providers for people with Down syndrome of all ages.

Overview

The Mass General Hospital Down Syndrome Program 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 are ready to help your family member with any medical issue that may occur.

Our Down Syndrome Program has five distinct clinical services to ensure that people with Down syndrome receive the specialty care that is specific for their age group:

  • Prenatal Services We offer consultations in a private setting for expectant parents who have received a prenatal diagnosis of Down syndrome.
  • 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.
  • Adult Clinic (ages 21 and older) Adults will be supported to lead healthy lives marked by meaningful engagements with their communities.

What will the appointment entail?

Each specific age group will have specialists available for that day that will meet the unique health care needs of individuals with Down syndrome for that specific age group.

How to Request an Appointment

To request an appointment, please first complete an intake form.

Click here to view our team's special interests in Down syndrome (pdf)

Team Members and Program Overview

Download our program overview and information about our team members in PDF format:

Down Syndrome Program Team Members PDF Download Down Syndrome Program Overview PDF Download

Spanish (pdf) | Traditional Chinese (pdf) | Simplified Chinese (pdf)

Mission Statement

We are a collaborative, multidisciplinary team, serving people with Down syndrome of all ages and their families. We provide evidence-based clinical care, education, and cutting-edge research so that individuals with Down syndrome can reach their full potential.

Vision Statement

Our passion is to provide healthcare, research, and education that contribute to a world in which all people with Down syndrome are accepted, celebrated and have the opportunity to fully realize their potential.

Meet the Team

On the day of your clinic, you will not see all of the providers listed below but the appropriate ones for your age range.

Clinical Co-Directors

Other Physicians

Program Coordinator

Self-Advocate Resource Specialist

Social Worker

Advocacy Advisor

Nutritionist

Therapy Team

Pediatric Feeding Program

Psychiatrist

Psychologists

Educational Advocate

Additionally, we can facilitate referrals for other services, including Cardiology, Ophthalmology, Dentistry, and others.

Patient Resources

Patient Handouts

Click here to view patient handouts from the Down Syndrome Program at MGHfC and Mass General.

Resources for Expectant Parents

Resources for Families Coping with a Miscarriage or a Loss

Resources for New Parents

Disability Organizations

Local Organizations

National Organizations

Healthcare Professionals

Outpatient Care of Patients with Down Syndrome for Med Students

Directed by Down Syndrome Program co-director Alison Schwartz, MD, this Harvard Medical School course is intended to provide advanced medical students with an exposure to the care of patients with Down syndrome across the age spectrum. People with Down syndrome typically have a number of health needs that arise from their chromosomal condition, which alters the screening tests and milestones that must be considered in the course of a regular clinic visit. Learn more.

Newborn with Down Syndrome Medical Work-up

Our Newborn with Down Syndrome Medical Work-up (pdf) includes a checklist to help you plan the health screenings and resources that are recommended for babies with Down syndrome.

News

9 Investigates: Doctors question accuracy of prenatal tests that predict Down syndrome - 12/2/2016, Mass General
WSOC-TV segment quotes MGHfC physician Brian Skotko, MD, MPP about the potential implications of incorrect prenatal testing.

Urine test used to diagnose sleep apnea in Down syndrome children - 4/6/2011, Mass General
An MGH study may have found a way to diagnose obstructive sleep apnea via a urine test.

Their Voice: Why we must embrace, not eliminate, Down syndrome - 11/4/2017, Mass General
Daily Herald article segment quotes MGHfC physician Brian Skotko, MD, MPP.

Medical geneticist talks prenatal testing for Down syndrome - 10/5/2017, Mass General
Brian Skotko, MD, MPP delivered the annual Simpson College McBride Lecture focusing on the rise of prenatal testing.

Down Syndrome Prevalence On The Rise - 8/31/2017, Mass General
As people with Down syndrome live longer, a new analysis led by Brian Skotko, MD, MPP, suggests that this population is growing, but that may not hold true for long.

MGH doctor working to dispel Down syndrome myths - 2/22/2017, Mass General
FOX25 segment profiles the work of Brian Skotko, MD, MPP, who is dedicated to bringing Down syndrome knowledge and literature up to date.

New study examines medical cost of caring for Down syndrome child - 2/7/2017, Mass General
A new study led by Brian Skotko, MD, MPP takes a closer look at the financial impact of raising a child with Down syndrome.

The Pulse: People With Down Syndrome Living Longer, But At Higher Risk For Alzheimer's - 1/26/2017, Mass General
National Public Radio radio segment explains how and why the Down syndrome population is at greater risk for Alzheimer’s disease.

The aging of the population with Down syndrome is a positive sign - 1/4/2017, Mass General
Individuals with Down syndrome and their families can expect a lifetime of possibilities and potentials, explains Dr. Brian Skotko, MD, MPP.

Down Syndrome May Not Be Big Financial Burden on Families  - 11/16/2016, Mass General
A new study finds that having a child with Down syndrome costs $80 more monthly.

Running to Celebrate Andie's Journey on Race Day and Beyond- 03/30/2016, MGHfC
Emily Anderson, of Shrewsbury, Mass., is running the 2017 Boston Marathon for the Down Syndrome Program. An at-birth diagnosis of Down syndrome for her daughter, Andie, turned out to be one of the Anderson's greatest blessings.

For their Down Syndrome child, a Tomball ISD family fights for more inclusion- 11/13/2016, Mass General
Houston Chronicle article quotes MGHfC physician Brian Skotko, MD, MPP.

Down Syndrome Rates May Be ‘Gross Overestimations,’ Study Finds - 10/23/2016, Mass General
Brian Skotko, MD, MPP discusses a new study that found that the condition may be less prevalent than once suspected.

Congratulations to Our 2016 Patriots Difference Makers of The Week - 9/13/2016, Mass General
Brian Skotko, MD, MPP discusses a new study that found that the condition may be less prevalent than once suspected.

My daughter has Down syndrome. Would I “cure” her if I could?  - 8/3/2016, Mass General
Brian Skotko, MD, MPP explains to the mother of a child with Down syndrome how researchers are developing drugs to improve memory.

MGH to build Down syndrome portal - 5/21/2016, Mass General
Boston Herald article discusses MGH’s new Down syndrome ‘virtual clinic’ program which will give patients the information they need, while taking stress off overwhelmed primary care physicians.

Positivity Prevails Among Those Touched By Down Syndrome - 3/9/2016, Mass General
Disability Scoop article features a study by MGHfC physician Brian Skotko, MD, MPP on the positive attitudes felt in families with a Down syndrome member.

Video

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