Phelan-McDermid Syndrome International Registry
Megan is the parent of a 19-year-old daughter with Phelan-McDermid Syndrome (PMS). This diagnosis includes autism, intellectual disabilities, epilepsy, ADHD, and other medical conditions. She is the Principal Investigator for the Phelan-McDermid Syndrome Data Network (PMS_DN, PCORnet) and the Phelan-McDermid Syndrome International Registry (PMSIR).
Megan is passionate about the value of the patient’s voice in: research, drug development, clinical trial design, development of related legislation, and quality of life decisions. She advocates for data sharing, collaborating with other advocacy groups, sharing resources and streamlining IRB practices and policies.
Monday, September 23
10:30 AM – 12:00 PM