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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

  • Amy Torres

Self-Advocate Resource Specialist

Social Worker

Nutritionist

  • Kimberly N. Jaumot, MS, RD, LDN

Therapy Team

Pediatric Feeding Program

Psychiatrist

Psychologists

Educational Advocate

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

Patient Handouts

Patient Handouts

Types of Down Syndrome

Sleep and Apnea

Other Medical Information

Celiac Disease

Constipation

Feeding Resources

Nutrition Resources

Life Skills Handouts

Patient Resources

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.

Non-Profit Down Syndrome Organizations

Other Disability Organizations

Healthcare Guidelines

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

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

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.

Most Families Cherish a Child With Down Syndrome, Survey Finds - 3/21/2016, Mass General
US News and World Reports Wellness article a new MGH study released on World Down Syndrome Day that shows the disease is not viewed as a curse.

Most families cherish a child with Down syndrome - 3/22/2016, Mass General
A new study, led by MGHfC physician Brian Skotko, MD, MPP finds in most families, everyone said they loved their family member who had Down syndrome, and almost as many families said they felt pride for the child.

New Effort To Boost Down Syndrome Research  - 12/11/2015, Mass General
Disability Scoop article quotes MGHfC physician Brian Skotko, MD, MPP.

Doctors Enlist Paintings to Hone Their Skills - 12/31/2014, Mass General
The MGH Down Syndrome program, led by physician Brian Skotko, MD, MPP is offering a new perspective on centuries old art work, potentially ‘diagnosing’ a portrait with Down syndrome

Genetic test solves 30-year old mystery behind man’s disabilities  - 8/12/2015, Mass General
WCVB-TV, Ch. 5, segment quotes MGHfC physician Brian Skotko, MD, MPP.

Drug Trial Holds Promise for Down syndrome, Alzheimers  - 3/22/2014, Mass General
A new clinical trial is testing whether a drug could help improve memory and cognition in people with Down syndrome and possibly patients with Alzheimer's..

It’s Down Syndrome Day, but for how long?  - 3/21/2014, Mass General
MercatorNet interviewed Brian Skotko, MD on World Down Syndrome Day, celebrated yearly on March 21, to discuss his passion to serve people with Down – even before they are born.

The Upside of Down Syndrome - 12/17/2014, Mass General
Meet Dr. Brian Skotko, champion of extra chromosomes.

IQ-Boosting Drugs Aim to Help Down Syndrome Kids Learn  - 3/3/2014, Research
Dr. Skotko talks about the potential impact of cognitive enhancing drugs for people with Down syndrome.

New study suggests new natal genetic tests could be offered to all pregnant women - 2/26/2014, Mass General
A large new study led by Boston researchers shows a simple blood test could detect chromosomal abnormalities in a fetus, allowing for a new generation of prenatal testing to be offered to all pregnant women.

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