Barbara joined the RCRF at its inception in 2014. She and founder Mark Laabs and their team have worked tirelessly with patients, researchers, medical institutions, and patient advocacy foundations to lead a collective mission to find a cure for rare cancers.
Barbara currently leads all RCRF patient advocacy and institutional relationships and manages Pattern.org, RCRF’s initiative that enables patient donations of fresh tissue, fluid, and data by coordinating collection and transfer from any U.S. hospital to innovative research projects at world-leading academic institutions. She is a consultant to the Cancer Cell Line Factory at the Broad Institute of MIT and Harvard, an active member of the Rare Disease Diversity Coalition (an initiative of the Black Women’s Health Imperative), a member of NORD’s Rare Cancer Coalition, and is on the Advisory Panel for the Sarcoma Coalition.
Alliance for Rare Cancers I Jedi Rare Cancer Foundation
P.O. Box 683501, Park City, Utah 84068
The Alliance for Rare Cancers is a fiscally sponsored program of the Jedi Rare Cancer Foundation, a 501(c)(3) nonprofit organization, accepting tax-deductible donations from individuals, corporations, family-advised funds, and foundations. Federal Tax ID 86-2610819. All donations are tax deductible as allowed by law.I
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