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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:
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.
To request an appointment, please first complete an intake form.
Click here to view our team's special interests in Down syndrome (pdf)
Download our program overview and information about our team members in PDF format:
Spanish (pdf) | Traditional Chinese (pdf) | Simplified Chinese (pdf)
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.
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.
On the day of your clinic, you will not see all of the providerslisted below but the appropriate ones for your age range.
Additionally, we can facilitate referrals for other services, including Cardiology, Opthalmology, Dentistry, and others.
Non-Profit Down Syndrome Organizations
Other Disability Organizations
Health Care Guidelinesfrom the National Down Syndrome Society
Children with Down Syndrome: Health Care Information for Familiesfrom the American Academy of Pediatrics
New & Expectant Parents
Down Syndrome Program Guardianship Packet (PDF): Parents' guide to guardianship including checklist for clinical team report, checklist for medical certificate and frequently asked questions.
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.
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.
Commonly asked questions and answers for parents about Translocation Down Syndrome.
Commonly asked questions and answers for parents about Trisomy 21 Down Syndrome.
Commonly asked questions and answers for parents about Mosaic Down Syndrome.
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.
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.
The following checklist will help you plan the screenings and resources that are recommended for babies with Down syndrome.
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.
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 (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 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 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.
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.
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.
Children with Down syndrome sometimes need specialized care for their unique dental needs. Read this handout to learn how to prepare your child for a visit to the dentist, where to find the right dentist and how to care for your child’s teeth at home.
Constipation can make it very uncomfortable for your son/daughter to use the bathroom. It can also negatively affect your son/daughter’s behavior. Read this handout to learn more about constipation and how you can help ease your son/daughter's discomfort.
Adding fiber into your child’s diet can be a helpful way to ease the discomfort of constipation. Read this handout to learn more about fiber and how you can add fiber to your son/daughter's diet to help ease constipation.
Managing constipation by adding fiber into your son/daughter’s gluten-free diet can be a helpful way to ease the discomfort of constipation. Read this handout to learn more about fiber and how you can add fiber to your son/daughter's gluten-free diet.
When a healthy diet is not enough to ease constipation, sometimes your child might need to use medication. Read this handout to learn about five medications that can help ease constipation. Talk with your son/daughter's doctor before starting medication.
Meeting with a dietitian can help your son/daughter meet his or her nutrition goals and get the best nutrition care. This handout will explain how you can schedule an appointment with a Registered Dietitian, how to find a dietitian and what will happen at the first appointment.
People with celiac disease cannot eat food with gluten. This handout will tell you about celiac disease, its symptoms and causes and how we test for celiac disease. Written in Spanish.
People with celiac disease cannot eat food with gluten. This handout will tell you about celiac disease, its symptoms and causes and how we test for celiac disease. Written in Portugese.
This short story can help you learn how to talk to the doctor when you visit the hospital for appointments. You'll also learn how to find the right words with activities that can help you express yourself.
Panel discussions on “Health and wellbeing – Access and equality for all” (on the occasion of World Down Syndrome Day).
Wall Street Journal article mentions Mass General Down Syndrome program.
Bloomberg article features Dr. Brian Skotko of the Mass General Down Syndrome program.
Science Magazine article features Dr. Brian Skotko of the Mass General 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.
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.
As prenatal tests proliferate and come earlier, more couples are arriving at a medical crossroads.
The lives of the 250,000 Americans with Down syndrome today are radically different than a generation ago.
Interview with Dr. Brian Skotko, co-director of the Mass General Down Syndrome Program on FOX25 News.
New numbers show about 4,700 babies are born each year with Down Syndrome. That's down according to Down Syndrome Education USA.
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.
SudburyPatch article includes mention of the Mass General Down Syndrome Program and Dr. Brian Skotko.
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, 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.
From WCVB-TV, Ch. 5, segment quotes MGHfC physician Brian Skotko, MD, MPP.
From WCVB-TV, Ch. 5, segment quotes MGHfC physician Brian Skotko, MD, MPP.
From Time Magazine, article quotes MGHfC physician Brian Skotko, MD, MPP.
Grand Rounds presentation by Brian Skotko, MD, MPP, Co-Director of the Down Syndrome Program October 9th, 2012.
Grand Rounds presentation by Alison T. Schwartz, MD, Director of the Transitions Program at Mass General, May 7th, 2013.
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.
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.
Hear how the Mass General Down Syndrome Program helped Karen Kelly and her sisters when unexpected medical complications and problems with guardianship arose.
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