Sarah Bacon, MS
New York, NY
Representing: Patients, Caregivers, Patient Advocates
Term ends August 2023
Sarah Bacon is a rare disease patient, advocate, and writer. Shortly after her 2013 diagnosis with lymphangioleiomyomatosis (LAM), and after the sequester cuts to the National Institutes of Health, she wrote an op-ed in The Atlantic, "Medical Research Cuts Have Immediate Health Effects." Since then, she has applied her 15 years of professional communications, advocacy, and issue-related campaign design experience to advancing rare disease research and policy.
Bacon suggested and raised funds for a novel study on the link between LAM and melanoma, which share several biomarkers, including proteins. Melanoma took her father’s life and threatened hers. Fortunately, hers was caught early. The study bore meaningful results on the high incidence of melanoma family histories in LAM patients. When the LAM Lab faced losing a commitment from Novartis of a $200,000 in-kind donation for a pilot trial, Bacon advocated with Novartis executives and restored the donation.
Bacon secured bipartisan sponsors of The OPEN Act in the House of Representatives with Rare Disease Legislative Advocates, spoke on patient-driven medicine for Global Genes and The Milken Institute, and served on Global Genes’ grant application review committee. She has written on rare diseases for The Atlantic, Fast Company, The Washington Post, and New York Magazine, and is currently working on her first book, Living with Zebras.
Conflicts of Interest
- Refugees International, Board of Directors/Trustees
- Frontier Nursing University, Board of Directors/Trustees
- The LAM Lab, Columbia University, Volunteer
- Advisory Panel Member
- Advisory Panel on Rare Disease