Cystic Fibrosis Research Institute
Siri Vaeth, MSW
Executive Director
Cystic Fibrosis Research Institute
Siri is the Executive Director of the Cystic Fibrosis Research Institute (CFRI), a national nonprofit organization which funds innovative cystic fibrosis research while providing educational, advocacy and psychosocial support services for those living with this genetic degenerative disease. Her involvement with the organization began in 1995, after her daughter’s diagnosis with cystic fibrosis. During her tenure at CFRI, she has overseen the expansion of educational programs as well as services to address the psychosocial impacts of CF upon those living with the disease and their loved ones. She leads CF and rare disease advocacy efforts at the state and federal level, and oversees the expansion of resources for our racially and ethnically diverse CF community.
Siri earned her BA in Politics from UC Santa Cruz and her Master’s in Social Welfare from UC Berkeley. In partnership with other cystic fibrosis and rare disease groups she is actively engaged in efforts to establish state Rare Disease Advisory Councils, and advance legislation to improve access to quality therapies and care. She participates in numerous patient advocacy coalitions, including the Cystic Fibrosis Engagement Network, and serves on the American Thoracic Society’s Public Advisory Roundtable (ATS-PAR).
Saturday, November 5, 2022
7:30 AM – 9:30 AM ET