Because good health is the best gift of all!

The Trisomy 21 Program at Children’s Hospital of Philadelphia evaluates, treats and provides coordinated care for children and young adults with trisomy 21, also known as Down syndrome. Since its start in 2003, the program has cared for over 2,700 children and adults with trisomy 21 and their families. 

Led by Dr. Mary Pipan and Kim Schadt, the team has grown to 20 members, including developmental pediatricians, therapists, nurse coordinators, and program specialists, each dedicated to helping individuals with Down syndrome thrive across their lifespans. This multidisciplinary program provides education, facilitates healthcare coordination, and conducts in-depth reviews of medical, developmental, behavioral, educational and psychosocial needs. 

The core mission of the Trisomy 21 Program is to promote the health and wellbeing of individuals with Down syndrome throughout their lives. During clinic visits, providers review medical history, provide direct treatment, order necessary tests and refer patients to specialists when required. The team supports families between visits to answer questions, communicate with their medical team and coordinate urgent care within Children’s Hospital of Philadelphia.  

In addition to medical care, the team evaluates developmental and behavioral needs, including screening for autism spectrum disorder and ADHD, and connects families to early intervention services, school-based support and other community resources. Parents expecting a child with Down Syndrome can receive prenatal support from the team’s nurse coordinator, who offers information and connects parents to local Down syndrome organizations and medical providers. 

Education and advocacy are central to the program’s mission. Due to the high number of patients seen and the comprehensive care provided, the clinicians are well positioned to teach other healthcare providers. The team regularly presents at national and local conferences, hosts clinicians from other institutions to observe the clinic, and trains medical residents, nursing staff, and allied health students in Down Syndrome care. They also encourage caregivers to be effective advocates for their children, referring them to community resources and recreational programs. This becomes especially important as children transition from school to adulthood. 

At Children’s Hospital of Philadelphia, research is a crucial component of high-quality care. By deepening our understanding of Down Syndrome, the clinic improves patient outcomes. Ongoing collaborations with researchers help the team develop critical resources, such as the US Down Syndrome growth charts, as well as studies on sleep apnea, early childhood development, and brain development through imaging. Most of these studies are federally funded, and the team is often called upon to provide expertise and recruit study participants. 

Funding from the annual Buddy Walk helps expand these educational, research and advocacy efforts. About The National Down Syndrome Society and the Buddy Walk

The Trisomy 21 Program at Children’s Hospital of Philadelphia evaluates, treats and provides coordinated care for children and young adults with trisomy 21, also known as Down syndrome. Since its start in 2003, the program has cared for over 2,700 children and adults with trisomy 21 and their families. 

Led by Dr. Mary Pipan and Kim Schadt, the team has grown to 20 members, including developmental pediatricians, therapists, nurse coordinators, and program specialists, each dedicated to helping individuals with Down syndrome thrive across their lifespans. This multidisciplinary program provides education, facilitates healthcare coordination, and conducts in-depth reviews of medical, developmental, behavioral, educational and psychosocial needs. 

The core mission of the Trisomy 21 Program is to promote the health and wellbeing of individuals with Down syndrome throughout their lives. During clinic visits, providers review medical history, provide direct treatment, order necessary tests and refer patients to specialists when required. The team supports families between visits to answer questions, communicate with their medical team and coordinate urgent care within Children’s Hospital of Philadelphia.