The rare disease community relies on state and federal legislation to help accelerate rare disease diagnosis, therapy development, clinical care and social support. Rare disease patients, families and caregivers can make a difference with policymakers, making sure that individual and community needs are considered in legislation. Join Global Genes’ legislative advocacy partners to hear updates on pending legislation and advocacy efforts that are critical for the community and learn the ins and outs of advocating for rare patients.
Speaker: Angela Ramirez Holmes, President, California Action Link for Rare Diseases (CAL Rare)
Speaker: Jennifer Bernstein, Executive Vice President, Horizon Government Affairs
Speaker: Julia Jenkins, Executive Director and Secretary of the Board of Directors, EveryLife Foundation for Rare Diseases
Speaker: Darlene Shelton, President and Founder, Danny’s Dose Alliance
Day 1, Track 3