Julia Jenkins EveryLife Foundation for Rare Diseases

Focused on building the rare disease community and ensuring rare disease patients have a voice in public policy, Julia collaborates with individual patients, caregivers, patient organizations and advocates to ensure the work of the EveryLife Foundation for Rare Diseases continues to meet the needs of the community. Julia has served at the Foundation since its inception in 2009. Her expertise in grassroots organizing and legislative advocacy inspired her to launch Rare Disease Legislative Advocates, Rare Disease Week on Capitol Hill and Rare Across America, programs that unite and amplify the voices of rare disease patient advocates across state and federal legislatures. In 2012, Julia rallied the rare community during PDUFA V negotiations to ensure that all provisions that benefited rare disease patients were included into FDASIA, which was signed into law.  Julia’s leadership united the rare disease community to support passage of the 21st Century Cures Act in 2016 and the unanimous passage of newborn screening legislation in California and Florida. Julia is a board member of CAL Rare. She serves on the steering committee and co-chairs the policy working group for the Rare Disease Diversity Coalition. In addition, Julia serves on the Policy Board of the National Health Council.