EPDSC Coronavirus Information

The Eastern Pennsylvania Down Syndrome Center is committed to the health and safety of our patients, members, volunteers and staff. As you are most likely aware, the Coronavirus (COVID-19) is of significant concern in certain regions of the world and continues to grow as a concern nationally and locally.

NEW UPDATE 11/9/21

COVID-19 Vaccines in Children and Adolescents

The EPDSC strongly encourages the COVID-19 vaccination for all of our children with Down syndrome, ages 5 years and older, who do not have contraindications, as per the CDC and American Academy of Pediatrics recommendations. All children with Down syndrome are considered at increased risk of severe disease and complications from COVID-19 infection.

Follow the links below for more information and as reference to the resources we used to base our recommendation:

Children with prior infection or disease with SARS-CoV-2 should receive the COVID-19 vaccination, according to CDC guidelines.

Children with potential contraindications should discuss with their pediatrician.

A list of contraindications can be found HERE.

NEW UPDATE 10/19/21

Can my loved one with Down syndrome get a third COVID-19 vaccine?

There are persons with certain health care conditions who need a third vaccine to become as immunologically protected from COVID-19 as counterparts who receive the usual one or two vaccine doses.  Separately, there are persons with certain characteristics who are encouraged to get a booster vaccine to increase any waning immunological protection from the original vaccines. Here is what this means for people with Down syndrome:   

Third Vaccines:  The FDA announced and the CDC recommended that certain people whose immune systems are compromised moderately to severely should receive an additional dose of mRNA COVID-19 vaccine after the initial 2 doses of Pfizer-BioNTech or Moderna vaccines.  (Recipients of the Johnson & Johnson/Janssen COVID-19 vaccine are not eligible to receive additional doses.) This would include the following patients with Down syndrome who are 12 years or older:

  • who are actively receiving treatment for cancer, such as leukemia
  • Who have received an organ transplant and taking medicines to suppress the immune system
  • who received a stem cell transplant within the past 2 years
  • who are on active treatment with high-dose corticosteroids or other drugs that may suppress your immune response

Booster Vaccines: The FDA announced and the CDC recommended that certain people receive an additional third “booster” vaccine after 6 months have elapsed since their second vaccine.  This would include the following patients with Down syndrome:

  • All people with Down syndrome, ages 18 and older,  who received the Pfizer-BioNTech (the “Comirnaty vaccine”) are now eligible for this vaccine.
  • People with Down syndrome younger than 18 years are not yet eligible.
  • People with Down syndrome who received the Johnson & Johnson /Janssen or Moderna vaccines are not yet eligible

The New York Times offers this nice coverage on commonly asked questions about the booster vaccine.

How can my loved one with Down syndrome get a COVID-19 vaccine?

All people ages 12 and older living in Pennsylvania can now get a COVID-19 vaccine (and third shot or booster, if meeting the eligibility criteria above).  (People ages 12-17 are only eligible for the Pfizer-BioNTech’s vaccine.) This web page outlines the registration and eligibility information for Pennsylvania.  

NEW UPDATE 8/23/21

As children return to school, we realize there is increased anxiety over COVID-19 and the Delta Variant. Please refer to the EPDSC website for general information regarding COVID-19 and children with Down syndrome. https://www.epdsc.net/coronavirus-updates The Centers for Disease Control also has very useful and accurate information at CDC.gov

We strongly recommend that children with Down syndrome 12 years old and older receive COVID vaccine prior to starting school. When the vaccine is approved for younger ages, we will be recommending that also. We also strongly recommend that ALL children with Down syndrome (even those that have received vaccine) over the age of 2, should wear an appropriate mask when on the bus or inside school building. Additionally, children with Down syndrome and immunocompromising conditions should receive a booster vaccine (3rd dose), eight months after initial vaccination. Please check with your child’s primary care provider if you have questions about their status

For those children with Down Syndrome that are having some difficulties with mask-wearing, the following website has some helpful suggestions:https://www.chop.edu/news/increasing-mask-compliance-children-down-syndrome

Parents should make this decision on their own with their families’ best interest in mind.

NEW UPDATE 3/3/21 Click on the language you prefer to read the valuable, free COVID-19 & Down Syndrome Resource in English and Spanish published by GLOBAL and the national consortium. 

NEW UPDATE 1/28/21 CLICK HERE FOR information about unpaid caregivers and their inclusion in Priority 1A for the COVID-19 vaccination from the PA Office of Developmental Programs.

NEW PA UPDATE 1/19/21: Expansion of COVID-19 Vaccine Eligibility to Individuals 65 and Older, Those with Underlying Conditions

UPDATE: Effective 7/1/2020, the EPDSC office will be open for appointments with extra safety precautions and increased cleaning procedures. For your healthy and safety, all staff will be screened prior to entering the office for the day’s appointments. For patients, the following policy will be in place: 

On the day of your appointment:

  • You must wear a mask unless you have a medical reason not to.
  • Only the patient and 1 caregiver will be allowed at the appointment to allow for safe social-distancing.
  • Arrive 15 minutes before your appointment and call the office at 610-402-0184 from the parking lot when you arrive.
  • You will be given a health screening over the phone and further instructions on how to proceed to your appointment.

We will continue to see patients via video visits if that is preferred for your family. We are available by phone or via email to answer any questions or concerns you have about your child or loved one. Voice messsages are being checked daily at 8:00am and 12:00pm. 

Our team will continue to work mostly remotely. We thank you, in advance, for your patience and flexibility, as our response times might be slower than usual. If your loved one with Down syndrome has any symptoms of COVID-19, please contact his/her primary care physician by phone to inquire about your next best steps.

We will continue to use information from the PA Department of Health, the CDC, and our local Health Bureaus to guide us, in order to provide an accurate, realistic, and measured response to this ongoing public health challenge.

Please continue to check our website, social media sources, and your email for any updates to our procedures, appointments, and upcoming events.

NEW! The Down Syndrome Medical Interest Group – USA (DSMIG-USA) issued an updated position statement on the COVID-19 vaccine on January 5, 2021 (the original statement was issued 12/16/2020).

Below are some resources we think you might find helpful during this time:




Everything You Need to Know About COVID-19 & Down Syndrome

COVID-19 Information By and For People with Disabilities

Talking to Kids About the Coronavirus

Q&A’s on providing services to children with disabilities during the Coronavirus Outbreak

CDC Recommendations 

The Center for Humanistic Change COVID-19 Resource Guide

Educational Resources for Families Regarding COVID-19