Everylife Foundation for Rare Diseases

The policy priorities and initiatives of the Everylife Foundation are identified by the Everylife Foundation community congress, to ensure that our policy priorities reflect the most pressing needs of the community. A membership-based program dedicated to collaboratively bringing patient organizations, industry leaders, and other Rare disease stakeholders together, the community congress acts as a strategic advisory council, providing advice and insight on urgent policy issues impacting the Rare disease community.

The Everylife Foundation for Rare Diseases is a 501c3 nonprofit, nonpartisan organization dedicated to empowering the Rare Diseases patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to lifesaving diagnoses, treatments and cures. We do not speak for patients. We provide the training, education, resources and opportunities to make their voices heard. By activating the patient advocate, we can change public policy and save lives.

Rare disease legislative advocates - Rare disease legislative advocates rdla is a collaborative program designed to support the advocacy of all Rare disease groups. Rdla works to empower the individual to become an advocate by providing informational meetings, legislative resources, advocacy tools, and special events that support organizations and advocates working to promote Rare disease legislation. Rdla's goal is to bring the Rare disease community together, grow the patient advocacy community and work collectively to ensure that the many voices of patients with Rare Diseases have an opportunity to be heard in state government and on capitol hill.