Welcome to the UNC Down Syndrome Program

About Us

The UNC Down Syndrome Program brings together a multidisciplinary team of experts to optimize the health and wellbeing of all individuals with Down syndrome in NC. We are excited to serve individuals with Down syndrome across the entire lifespan, from prenatal visits to adults. We are a consultative clinic and will work closely with your child’s primary care provider. Our team is comprised of some of the nation’s top leaders in Down syndrome care and research.

Why Choose the UNC Down Syndrome Program?

Our Coordinated Care

The UNC Down Syndrome Multidisciplinary Clinic will be held weekly on Mondays. The services offered in clinic will include physical exam, hearing screening by audiology, vision screening, laboratory blood tests, imaging studies (X-rays, Echocardiogram, etc.), developmental and psychological assessments, and more. A family navigator with lived experience together with our team will support families through linkage to community resources, enrollment in Medicaid waivers, navigating school/IEP support, transition to adulthood, and more.

Our Multidisciplinary Team

Our dedicated multidisciplinary team includes a variety of sub-specialist physicians, psychologists, therapists (PT, OT, Speech/Feeding, lactation), audiologists, and dieticians. The team is committed to providing exceptional care for your child and your family:

• Dr. Kate Westmoreland, our medical director, is a pediatrician and the mother of a toddler with Down syndrome. She will see all children and adolescents.
• Dr. Rita Lahou, our family medicine provider, will see adults.
• Some of our sub-specialists will be integrated into our multidisciplinary clinic. For others, we will facilitate referrals for follow-up a separate specialty clinic.
• We are eagerly recruiting a dedicated nurse coordinator for this clinic, generously supported by the North Carolina Down Syndrome Alliance (NCDSA).

How to Make an Appointment

We are not yet accepting referrals for the clinic. If you are interested in making an appointment in the new UNC Down Syndrome Clinic or learning more about our services, please complete our patient intake form. Once we are able to accept referrals, our team will be in contact to schedule your first appointment! We look forward to seeing you in early 2025!

Clinic Location

The UNC Down Syndrome Clinic will be located in the UNC Children’s Specialty Clinic, a child-friendly, ID/D trained, state-of-the-art clinic and infusion center located on the ground floor of the NC Children’s Hospital on UNC-Chapel Hill main campus.

A Leader in Research

The core of our mission is to better understand Down syndrome, to optimize the health and wellness of individuals with Down syndrome, and to improve the prevention and treatment of co-occurring conditions through research. The University of North Carolina at Chapel Hill has a long and remarkable history of interdisciplinary research related to developmental disabilities including autism, Fragile X syndrome, and Angelman syndrome, with more recent efforts to focus on Down syndrome. This includes over five decades of continuous NIH funding of the Intellectual and Developmental Disabilities Research Center (IDDRC), housed in the Carolina Institute for Developmental Disabilities (CIDD). The IDDRC supports 55 investigators across 13 departments and 110 externally funded grants.

Researchers across UNC have funded research related to Down syndrome spanning the full continuum of translational research from basic science to clinical research to community-based research.

Current Research Studies Open at UNC for individuals with Down Syndrome:

• Down Syndrome Infant Brain Imaging Study
  
  • A study to better understand very early brain development in Down Syndrome.
  • Ages 6 months to 24 months
  • If interested, contact Renee: renee_mayfield@med.unc.edu
• Down Syndrome INCLUDE Study
  
  • A study to better understand hearing in individuals with Down syndrome (can enroll if patient has normal hearing or hearing loss)
  • Ages 5 years to 25 years.
  • If interested, contact: hearinglab@med.unc.edu
• The PACE program: Physical Activity and Community EmPOWERment
  
  • A study to pilot test two multi-level physical activity programs — Step It Up and Power Hour — to understand the feasibility, acceptability, and fidelity of each.
  • Age: 18 years of age and older with intellectual disabilities, including Down syndrome.
  • If interested contact Kara: kara.hume@unc.edu