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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.

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

Nutritionist

Pediatric Therapy Team

Psychologist

Educational Advocate

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

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

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

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.

Specialists at the Massachusetts General Hospital Down Syndrome Program evaluate and treat children with the following conditions:

As part of our comprehensive evaluation, our specialists also evaluate for many other medical conditions that occur in a higher frequency in people with Down syndrome, including, but not limited to, the following:

Non-Profit Down Syndrome Organizations

Other Disability Organizations

Healthcare Guidelines

Health Care Guidelines from the National Down Syndrome Society

Children with Down Syndrome: Health Care Information for Families from the American Academy of Pediatrics

New & Expectant Parents

Guardianship

Down Syndrome Program Guardianship Packet (PDF): Parents' guide to guardianship including checklist for clinical team report, checklist for medical certificate and frequently asked questions.

Patient Handouts

Blood Tests in Children With Down Syndrome (PDF)

Problems with blood in children with Down syndrome are rare. It is important to understand these conditions though. Read this document to learn more about reasons and ways to check your child’s blood.

Abnormal Blood Tests in Children With Down Syndrome (PDF)

Problems with blood in children with Down syndrome are rare. It is important to understand these conditions though. Read this document to learn more about reasons and ways to check your child’s blood.

Helpful Information for Breastfeeding Your Baby With Down Syndrome (PDF)

Congratulations on the birth of your baby! It is wonderful that you have decided to breastfeed and provide your baby with such a special gift.

Translocation Down Syndrome (PDF)

Commonly asked questions and answers for parents about Translocation Down Syndrome.

Trisomy 21 Down Syndrome (PDF)

Commonly asked questions and answers for parents about Trisomy 21 Down Syndrome.

Mosaic Down Syndrome (PDF)

Commonly asked questions and answers for parents about Mosaic Down Syndrome.

Hearing Loss in Children with Down Syndrome (PDF)

Hearing loss is common in children with Down syndrome and can affect your child's development. Read this handout to learn the different types of hearing loss and how we screen for hearing loss.

Behaviors of Children with Down Syndrome (PDF)

Children with Down syndrome may have a variety of unique behaviors. It is important to provide positive encouragement to children and remain patient in order for these talents and skills to grow.

Information for Physicians (PDF)

The following checklist will help you plan the screenings and resources that are recommended for babies with Down syndrome.

Hematologic and Oncologic Conditions in Down Syndrome: An Overview for the Primary Care Provider (PDF)

Heme/onc conditions in Down syndrome (DS) are rare, seen in only 1 to 2 percent of individuals with DS. However, the consequences can be serious. This document will review the spectrum of associated heme/onc conditions as well as important screening guidelines.

Preparing for Your Child's Sleep Study (PDF)

A sleep study is a procedure that is done overnight in the Massachusetts General Hospital Sleep Lab. This study is the only way to diagnose obstructive sleep apnea (OSA). Read this handout to learn what to expect for your child’s sleep study.

Obstructive Sleep Apnea in Children with Down Syndrome (PDF)

Obstructive sleep apnea (OSA) is a medical condition that causes breathing trouble during sleep. Children with weak muscles or low muscle tone, as in Down syndrome, are more likely to have OSA. Read this handout to learn more about OSA in your child with Down syndrome.

Celiac Disease and Down Syndrome (PDF)

Celiac disease is a chronic digestive condition where the body reacts against a protein called gluten. Read this handout to learn about how celiac disease is diagnosed in people with Down syndrome.

Nutrient Density in People with Down Syndrome (PDF)

Nutrient dense foods have a lot of vitamins and minerals without a lot of calories. It is especially important for people with Down syndrome to eat nutrient dense foods. Read this handout to learn how nutrient dense foods help you live a happy, healthy life.

Infantile Spasms and Down Syndrome (PDF)

Knowing what to look for can be helpful in detecting infantile spasms as soon as possible. Infantile spasms are a type of seizure, and seizures occur in 8 to 10 percent of children with Down syndrome. The earlier infantile spasms are identified, the better your child’s prognosis will be.

Down Syndrome and Regression (PDF)

Regression is a fast and unusual loss of thinking skills, socializing and daily activities. It also may include an increase in unhealthy behaviors. Regression occurs rarely in people with Down syndrome, but we hope this handout will help you learn about the signs of regression and when to seek care for your son or daughter with Down syndrome.

MGH and MGfC launch new Down syndrome program

The MGH and MassGeneral Hospital for Children have launched one of the only comprehensive adult and pediatric Down syndrome programs in the nation.

Ben Majewski Inspires Down Syndrome Clinics

Ben Majewski, Resource Specialist in the MassGeneral Hospital Down Syndrome Program, tells clinical leaders at a national conference that they should hire a person with Down syndrome.

Ben Majewski: Una vida intensa y plena

Profile of Ben Majewski, Self-Advocate Resource Specialist at the Mass General Down Syndrome Program, in the journal "Sindrome de Down: Vida Adulta," from the Fundación Iberoamericana Down 21 in Madrid, Spain. Article is in Spanish.

Loring School Little Buddy Challenge

SudburyPatch article includes mention of the Mass General Down Syndrome Program and Dr. Brian Skotko.

Down Syndrome: One Family's Decision

From WCVB-TV, Ch. 5, segment quotes MGHfC physician Brian Skotko, MD, MPP.

Earlier, Easier Down Syndrome Test

From WCVB-TV, Ch. 5, segment quotes MGHfC physician Brian Skotko, MD, MPP.

Will New Mass. Law Discourage Women from Aborting Fetuses with Down Syndrome?

From Time Magazine, article quotes MGHfC physician Brian Skotko, MD, MPP.

Interview: Dr. Brian Skotko

New numbers show about 4,700 babies are born each year with Down Syndrome. That's down according to Down Syndrome Education USA.

Doctors Finding it Easier to Diagnose Down Syndrome

Interview with Dr. Brian Skotko, co-director of the Mass General Down Syndrome Program on FOX25 News.

With Down syndrome diagnoses comes a wrenching choice

As prenatal tests proliferate and come earlier, more couples are arriving at a medical crossroads.

Life with Down syndrome is full of possibilities

The lives of the 250,000 Americans with Down syndrome today are radically different than a generation ago.

A Lifetime of Care at the Down Syndrome Program

After expanding its doors in July of 2012, the Down Syndrome Program has grown to include numerous age-appropriate clinics, experts from Mass General, MGHfC and the Mass Eye and Ear Infirmary, and multidisciplinary care along with state-of-the-art resources to provide seamless transition from pediatric to adult care.

Interview: Dr. Allie Schwartz

Dr. Schwartz talks about Down Syndrome with the hosts of Your Health® radio, a weekly one-hour radio talk show on patient health produced by the University of North Carolina Department of Family Medicine.

Down Syndrome Day: Ben Majewski Speaks at UN

Panel discussions on “Health and wellbeing – Access and equality for all” (on the occasion of World Down Syndrome Day).

Can Down Syndrome Be Treated?

Science Magazine article features Dr. Brian Skotko of the Mass General Down Syndrome Program.

IQ-Boosting Drugs Aim to Help Down Syndrome Kids Learn

Bloomberg article features Dr. Brian Skotko of the Mass General Down Syndrome program.

People With Intellectual Disabilities Get a Say in Drug Trials

Wall Street Journal article mentions Mass General Down Syndrome program.

Grand Rounds: Down Syndrome

MassGeneral Hospital for Children Grand Rounds are presented every Tuesday morning at 8:00 am in the O'Keeffe Auditorium.

Keeping Children and Adolescents with Down Syndrome Healthy: Medical Updates for Physicians

Grand Rounds presentation by Brian Skotko, MD, MPP, Co-Director of the Down Syndrome Program October 9th, 2012.

Lost in Transition

Grand Rounds presentation by Alison T. Schwartz, MD, Director of the Transitions Program at Mass General, May 7th, 2013.

Noninvasive Prenatal Testing for Down Syndrome in Japan

Dr. Brian Skotko and members of the Mass General Down Syndrome Program talk to reporters from Japan about the impact of prenatal testing for Down syndrome here in the United States, just as Japan starts to make similar tests available to its people.

Keeping Adults with Down syndrome Healthy

Dr. Alison T. Schwartz, clinical co-director of the Mass General Down Syndrome Program, and Ben Majewski, self-advocate resource specialist, talk about how to keep adults with Down syndrome healthy.

The Kelly Family's Story: Compassionate Care in Extraordinary Circumstances

Hear how the Mass General Down Syndrome Program helped Karen Kelly and her sisters when unexpected medical complications and problems with guardianship arose.

Blood Tests in Children With Down Syndrome (PDF)

Problems with blood in children with Down syndrome are rare. It is important to understand these conditions though. Read this document to learn more about reasons and ways to check your child’s blood.

Abnormal Blood Tests in Children With Down Syndrome (PDF)

Problems with blood in children with Down syndrome are rare. It is important to understand these conditions though. Read this document to learn more about reasons and ways to check your child’s blood.

Helpful Information for Breastfeeding Your Baby With Down Syndrome (PDF)

Congratulations on the birth of your baby! It is wonderful that you have decided to breastfeed and provide your baby with such a special gift.

Translocation Down Syndrome (PDF)

Commonly asked questions and answers for parents about Translocation Down Syndrome.

Trisomy 21 Down Syndrome (PDF)

Commonly asked questions and answers for parents about Trisomy 21 Down Syndrome.

Mosaic Down Syndrome (PDF)

Commonly asked questions and answers for parents about Mosaic Down Syndrome.

Hearing Loss in Children with Down Syndrome (PDF)

Hearing loss is common in children with Down syndrome and can affect your child's development. Read this handout to learn the different types of hearing loss and how we screen for hearing loss.

Behaviors of Children with Down Syndrome (PDF)

Children with Down syndrome may have a variety of unique behaviors. It is important to provide positive encouragement to children and remain patient in order for these talents and skills to grow.

Information for Physicians (PDF)

The following checklist will help you plan the screenings and resources that are recommended for babies with Down syndrome.

Hematologic and Oncologic Conditions in Down Syndrome: An Overview for the Primary Care Provider (PDF)

Heme/onc conditions in Down syndrome (DS) are rare, seen in only 1 to 2 percent of individuals with DS. However, the consequences can be serious. This document will review the spectrum of associated heme/onc conditions as well as important screening guidelines.

Preparing for Your Child's Sleep Study (PDF)

A sleep study is a procedure that is done overnight in the Massachusetts General Hospital Sleep Lab. This study is the only way to diagnose obstructive sleep apnea (OSA). Read this handout to learn what to expect for your child’s sleep study.

Obstructive Sleep Apnea in Children with Down Syndrome (PDF)

Obstructive sleep apnea (OSA) is a medical condition that causes breathing trouble during sleep. Children with weak muscles or low muscle tone, as in Down syndrome, are more likely to have OSA. Read this handout to learn more about OSA in your child with Down syndrome.

Celiac Disease and Down Syndrome (PDF)

Celiac disease is a chronic digestive condition where the body reacts against a protein called gluten. Read this handout to learn about how celiac disease is diagnosed in people with Down syndrome.

Nutrient Density in People with Down Syndrome (PDF)

Nutrient dense foods have a lot of vitamins and minerals without a lot of calories. It is especially important for people with Down syndrome to eat nutrient dense foods. Read this handout to learn how nutrient dense foods help you live a happy, healthy life.

Infantile Spasms and Down Syndrome (PDF)

Knowing what to look for can be helpful in detecting infantile spasms as soon as possible. Infantile spasms are a type of seizure, and seizures occur in 8 to 10 percent of children with Down syndrome. The earlier infantile spasms are identified, the better your child’s prognosis will be.

Down Syndrome and Regression (PDF)

Regression is a fast and unusual loss of thinking skills, socializing and daily activities. It also may include an increase in unhealthy behaviors. Regression occurs rarely in people with Down syndrome, but we hope this handout will help you learn about the signs of regression and when to seek care for your son or daughter with Down syndrome.

Down Syndrome Program

Yawkey Center for Outpatient Care, Suite 6C
55 Fruit Street
Boston, MA 02114

Phone: 617-643-8912
Email: DownSyndrome@partners.org

Public Transportation Access: yes
Disabled Access: yes

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Mailing Address:

MassGeneral Hospital Down Syndrome Program
185 Cambridge Street, Room 2222
Boston, MA 02114

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