Supporting Siblings in Rare Disease Families

Ryan Mendel is a graduate student in genetic counseling who has already immersed herself in mitochondrial research, clinical care, and rare disease advocacy. In this episode of Energy in Action, host Marcy Young speaks with Ryan about her path from a high school genetics class to working in the Mitochondrial Medicine Frontier Program at Children’s Hospital of Philadelphia, where she conducted large-scale drug screening research and presented findings at national conferences. Ryan shares what it was like to witness both the lab side and the clinic side of mitochondrial disease—and how that dual perspective shaped her commitment to patient-centered care.

Now completing her master’s degree in genetic counseling, Ryan is focusing her thesis on an often-overlooked group in rare disease families: unaffected siblings. She discusses how pediatric genetic diagnoses impact siblings emotionally, socially, and long-term—from feeling pressure to overachieve, to becoming young caregivers, to quietly carrying fear and uncertainty. Ryan explains her goal of creating practical, family-centered resources that genetic counselors can use to better support siblings from the very beginning. This conversation offers hope for the future of rare disease care and highlights the importance of treating the whole family—not just the diagnosis.

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