Medical needs change as people with Prader-Willi syndrome grow, and families often have questions about what to watch for, which specialists to see, and what care should look like at each stage.
At this year’s FPWR Family Conference, three experienced PWS clinicians will lead age-specific sessions covering medical care from infancy through adulthood. All three are members of the PWS Clinical Investigative Collaborative (PWS-CLIC), a network of PWS clinical experts working together to improve care and accelerate research.
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Endocrine Issues for Children Ages 0-2
Dr. Sani Roy is a pediatric endocrinologist at Cook Children’s Medical Center with extensive experience caring for children with PWS.
Her session will focus on the early years, including medical needs, currently available medications, nutritional phases, orthopedic screening, gastrointestinal concerns, and the specialists families may want on their care team.
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Endocrine Issues for Children Ages 3-9
Dr. Amy Fleischman is a pediatric endocrinologist at Boston Children’s Hospital with extensive experience caring for children with PWS.
She will walk families through important considerations during childhood, including medical care, medications, nutritional phases, orthopedic screening, GI concerns, and which specialists may be helpful as children grow.
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Endocrine Issues for Teenagers and Adults with PWS
Dr. Diane Stafford is a pediatric endocrinologist at Stanford University School of Medicine with extensive experience caring for people with PWS.
Her session for families of teens and adults will cover medical needs during adolescence and adulthood, including medications, supplements, recommended labs, sex hormones, and other considerations as care evolves.
Meet all of our Family Conference speakers
Join us in Philadelphia!
The FPWR Family Conference brings together families, researchers, clinicians, and experts for a weekend of practical information, research updates, and connection with others in the PWS community.
This year’s conference will be held in Philadelphia, Pennsylvania. Discounted hotel rooms are available for $221 per night while the conference room block lasts. Hotel booking information is provided after conference registration.
