Undiagnosed With Christine from Pennsylvania

Send us Fan MailWhat happens when someone with a background in scientific research becomes the patient?In this episode of Rare Connection, I welcome Christine McGarvey, Pennsylvania State Ambassador for the National Organization for Rare Disorders (NORD), member of the Undiagnosed Diseases Network Foundation (UDNF) PEER Group, scientist, educator, advocate, and mother.Christine's journey is unlike most. Despite earning degrees in biochemistry, cell and molecular biology, and science education, she has spent years searching for answers for her own undiagnosed condition while also advocating for her child, who remains undiagnosed. Their family's story spans three generations, as Christine's mother also lived with an undiagnosed condition.Together, we discuss what it's like to experience the healthcare system from both sides—as a researcher who understands the science and as a patient and caregiver still searching for answers. Christine shares her experiences with the diagnostic odyssey, advocacy, research, the Undiagnosed Diseases Network Foundation, and the importance of bringing patients, clinicians, researchers, and advocacy organizations together to improve the future for those living with rare and undiagnosed diseases.This conversation also highlights the power of collaboration. Throughout the episode, we encourage the rare disease community to share research, resources, patient registries, and connections that may help families still searching for answers.Whether you're a patient, caregiver, healthcare professional, researcher, or simply interested in rare diseases, Christine's story is a powerful reminder that every unanswered question deserves to be explored—and that meaningful connections can help move research forward.Guest: Christine McGarvey • Pennsylvania State Ambassador, National Organization for Rare Disorders (NORD) • Member, Undiagnosed Diseases Network Foundation (UDNF) PEER Group • Scientist, educator, advocate, and motherResources Mentioned National Organization for Rare Disorders (NORD) https://rarediseases.org/ Undiagnosed Diseases Network Foundation (UDNF) Home Page - UDNF Global Genes https://globalgenes.org/ Rare-X RARE-X – Patient's Data Powering Progress Every Life Foundation for Rare Diseases EveryLife Foundation for Rare DiseasesSupport the show