CEO & Co-Founder
Aviva Rosenberg, JD is the co-founder and co-president of GCA. She is a health care attorney based in Pennsylvania and taught as an adjunct professor at several universities. Aviva was diagnosed with Gaucher disease at age 27, following 20 years of symptoms with no answers. Her son, Eli, also has Type I Gaucher disease. Aviva’s passion is educating about genetic diseases and screenings and talking about her personal journey with Gaucher disease, including the need to shorten patients’ diagnostic results. After yeas of dealing with insurance appeals and learning patients’ struggles with access and coverage, she was motivated to found Gaucher Community Alliance so that patients can share knowledge and experience to help others. She lives with her husband and three fabulous boys in Pittsburgh, Pennsylvania.
Events Consultant
Julie Perlin is a nonprofit professional with over a decade of experience supporting mission-driven organizations through event strategy, operations, and human resources. She serves as Event Consultant for Gaucher Community Alliance, where she creates meaningful events that bring the community together and further the organization’s mission.
In addition to her work with GCA, Julie is the Director of People and Operations for a disease-focused nonprofit and a Human Resources consultant. Her background spans fundraising, development, event planning, operations, and human resources, allowing her to take a thoughtful, people-centered approach to her work.
Julie’s passion for rare disease advocacy is both professional and deeply personal. As the mother of a daughter with type 1 Gaucher disease, her connection to the community is close to her heart. She is continually inspired by individuals and families impacted by rare diseases, as well as the providers and advocates who support them, and is committed to building strong, supportive communities around shared experiences.
