Treatment Programs

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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 doctors 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

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

Down Syndrome Research Opportunities

All current patients in the Down Syndrome Program at Massachusetts General Hospital are invited to participate in a research project to build a national registry to track the health and medical history of people with Down syndrome across their lives. Health information will be collected from existing and future medical records, so there are no extra study visits or procedures. This Down Syndrome Patient Registry is taking place at Massachusetts General Hospital, as well as other centers specializing in Down syndrome clinical care and research. For more information, please contact the healthcare staff at our Down Syndrome Program.

Registry Consent Form (pdf)

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

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

Please visit the National Down Syndrome Societywebsite for information regarding the healthcare guidelines for individuals with Down syndrome.

New & Expectant Parents

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

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.

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.

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.

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

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.

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

Connect with the Down Syndrome Program via social media:

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Mailing Address:

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

Directions to Mass General Hospital

 

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Support the Down Syndrome Program

Gifts from individuals help to support the hospital's three-part mission of innovative research and education in addition to patient care that is second to none.

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Connect with the Down Syndrome Program via Facebook and Twitter for updates on new programs, events, and more.