wellbeing news

Changing policies, saving lives

The Rare Diseases Community relies on state and federal law to expedite rare disease diagnosis, development of therapy, clinical care and social support. Patients, families, and caregivers of rare diseases can make a difference with policymakers by ensuring that individual and community needs are taken into account in legislation. Join Global Genes Advocacy Partner Partners to hear updates on pending legislation and advocacy efforts that are critical to the community and learn about the causes and causes of rare patient advocacy.

Lecturer: Angela Ramirez Holmes, President, California Rare Disease Link (Rarely CAL)
Speaker: Jennifer Bernstein, Executive Vice President for Horizon Government
Speaker: Julia Jenkins, CEO and Secretary of the Board of Directors, EveryLife Foundation for Rare Diseases
Speaker: Darlene Shelton, president and founder of Danny Alliance of Danny

Day 1, Track 3