Pennsylvania

State Ambassador: Christine McGarvey, MS

Christine McGarvey is an undiagnosed ultra rare patient and a member of the Undiagnosed Diseases Network Foundation (UDNF) Participant Engagement and Empowerment Resource (PEER) group. Christine received a MS in Cell and Molecular Biology from the University of Pennsylvania School of Medicine, and trained in classical ballet for 20 years. Her rare disease advocacy work has been the most fulfilling role she has held to date. She personally knows what it feels like to be a zebra searching for a diagnosis in a medical system that was created for horses.

Contact: [email protected]

State Ambassador: Advait Wattal

Advait is an undergraduate student at the University of Pennsylvania whose work focuses on rare disease research, advocacy, and policy. He has conducted research at Penn’s Genetic Diagnostic Laboratory and Thomas Jefferson’s Pancreatic Cancer Lab, published a review article titled "Rare Diseases and Their Unique Challenges", and presented and spoken at national conferences, including ASPHO and NORD. He is also the founder of Aware4Rare, a nonprofit dedicated to raising awareness and support for the rare disease community. Through his work, he hopes to help bridge science, advocacy, and policy to improve the lives of patients and families affected by rare diseases.

Contact: [email protected]


Events in Pennsylvania

Are there events for the rare disease community happening in your state? Email [email protected] to share your event with us.