NOTICE: Down Syndrome Program at Full Capacity
- We are able to see new babies with Down syndrome who are born at MassGeneral Brigham (MGB) hospitals.
- We are able to see infants under the age of 1 who have an MGB-affiliated pediatrician.
- We will continue to offer prenatal consultations for expectant parents who have received a prenatal diagnosis of Down syndrome.
When will you expand your clinic?
Medical insurance reimbursement only covers about 30% of our clinical expenses. As such, our program is dependent on philanthropy in order to sustain our existing clinics. Expanding the in-person offerings is not financially sustainable at this time.
Do you have a waiting list?
Yes, we are keeping a waiting list. You must first register the person with Down syndrome as a patient at Massachusetts General Hospital by calling: 866-211-6588. Once your have registered the patient, please email email@example.com to be added to the waitlist. Please include your name, your child’s name and date of birth, your email and phone number.
What other options do I have?Massachusetts General Hospital and our Down Syndrome specialists offer two alternative options that do not require you to come into the hospital for care:
- Down Syndrome Clinic to You “DSC2U”: The Down syndrome experts at MassGeneral have developed an online tool that caregivers can use to get personalized information for their loved one with Down syndrome. DSC2U offers the most current recommendations and resources to caregivers through personalized online documents that you can use along with the patient’s Primary Care Provider.
- MGH Second Opinion: Mass General offers online second opinion option to patients in most states of the USA. Once you upload the medical history of your child with Down syndrome, our DS specialists will review all the information and create a report for you.
Where else can I get care for my child with Down syndrome?
In New England, Boston Children’s Hospital and UMass Memorial Hospital both have Pediatric Down Syndrome Programs. The National Down Syndrome Society also keeps a list of Healthcare Providers and a Clinic Database you can reference.
Where else can an adult with Down syndrome receive care?
Regrettably, at this time, there are no other Down syndrome multidisciplinary specialty clinics in the Northeast that see adults with Down syndrome on an annual basis. Dr. Florence Lai is based at McLean Hospital and sees aging adults with Alzheimer’s disease. Dr. Julie Moran is affiliated with the Department of Developmental Services and sees aging adults with developmental disabilities. At this time, we encourage caregivers to work closely with the patient’s primary care physician and DSC2U can help guide you. Excellent medical advice can be found in the book The Guide to Good Health for Teens and Adults with Down Syndrome, available in English and Spanish, at www.woodbinehouse.com. The National Down Syndrome Society also keeps a list of Healthcare Providers and a Clinic Database you can reference.
My son or daughter is already an established patient. Can they continue to be seen?
Yes. All patients with Down syndrome who have had an appointment with one of our providers within the past 3 years can continue to be seen within our program. If the patient with Down syndrome is younger than 21, they will be offered a clinical spot in our adult clinic when they reach that age.
If it has been longer than three years since your child’s last appointment, he/she is considered a new patient and will have to be added to the wait list. Please call us at 617-643-8912 or email firstname.lastname@example.org to be added to the wait list.