EveryLife Foundation for Rare Diseases

The EveryLife Foundation for Rare Diseases is a US non-profit that drives science-based rare disease policy through economic analysis, legislative advocacy, and community education. It produced the landmark 2019 CORD report quantifying the $966 billion annual economic burden of rare diseases on the US healthcare system used to support federal funding legislation and advocates for passage of a National Plan for Rare Disease. Programmes include a Rare Disease Congressional Caucus, a biopharma grant programme, the RARE Patient Impact Survey, and annual Rare Disease Week on Capitol Hill.

Core Activities:

• Advocates for US and global rare disease policy reform
• Supports increased funding for rare disease research
• Promotes faster development and approval of orphan drugs
• Works with patient organisations to influence legislation
• Educates policymakers on unmet needs in rare conditions