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"excerpt": " RARE Foundation - Redefining Rare Disease Skip to content RARE Foundation About Our Story Our Impact Our Team Our Board Contact Us Financials and Governance Careers Partner With Us Need help navigating a rare disease? Get Support Issues Medicaid Newborn Screening FDA User Fees Rare Disease Innovation Hub Navigating the Access Environment Orphan Drug Incentives Driving Policy with Data See all Issues we advocate for. Our Issues Advocacy Why Advocate? How to Get Started Sign Up for Emails Take Action Trainings and Videos Youth Advocacy Find Your Legislators Congressional Caucus Advocate in Your State What's your Rare Disease Story? Share Programs RARE Young Adults RARE Artist RARE Pride RARE Diversity Community Congress RARE Access Program RARE Community Hub Community Scholarships RARE Community Grants RARE Advocate Training Series Connect with the rare disease community and explore ways to get involved. See All Events RARE Disease Week RARE Across America State Advocacy Days RARE Youth + Teen Advocacy Days Newborn Screening Bootcamp Scientific Workshop Join Team RARE Check out our upcoming events Calendar Donate One-Time Gift Monthly Gift Honor or Memorial Gifts Planned Giving Strategic Gifts Become a Sponsor Create Your Own Impact – Join Team RARE Here's how you can support our programs and advocacy Ways to Give News Resources & Data Language Search the site Submit search Redefining Rare Disease The RARE Foundation drives policies to accelerate equitable treatments and diagnosis that improve the quality of life for all people living with rare disease. About Us We empower people to speak up for the rare disease community. Get Started We fight for important legislation and funding to help people with rare disease. Our Priorities We shape policy with research highlighting the need for rare disease treatments. Resources & Data Help us amplify the voices of the rare disease community to drive meaningful change and influence policy. Donate Now 1 in 10 people in the U.S. (about 30 million people) live with one or more rare disease. $1 trillion The national economic burden of 379 rare diseases reached nearly $1 trillion in the U.S. in 2019. ~95% of the more than 10,000 known rare diseases have no FDA-approved therapies. 15 years Average time it takes for FDA approval for a rare disease drug. We Advocate For: See all issues Medicaid Protecting Medicaid coverage, since cuts to eligibility, benefits, or access would directly harm the rare disease community's ability to get care. Newborn Screening Join the fight to protect and advance one of America’s most successful public health programs. FDA User Fees Ensuring the needs of the rare disease community are included in the reauthorization of FDA user fees. Latest Updates RECAP: 8th Annual Newborn Screening Bootcamp October 06, 2026 The Updated Substantial Evidence Guidance September 28, 2026 Bipartisan Bill Introduced to Fund State Implementation of Newborn Screening Conditions September 25, 2026 See All News Take Action Please Restore the Federal Newborn Screening System Call on Congress to renew their strong support for evidence-based, federal newborn screening and restore the program. Speak Up See all actions Events See All Events Team RARE 26.2 Oct 12 2026 – Nov 13 Hybrid Learn More Rare Disease Congressional Caucus Briefing Oct 14 2026 Online Learn More 2026 TCS New York City Marathon Nov 1 2026 In Person Learn More RARE Opportunities Learn how you can join a community of advocates ages 16-30 Young Adults Learn how you can join a community of advocates ages 16-30 Sharing your story through art can help drive meaningful change Rare Artist Sharing your story through art can help drive meaningful change Connect with other rare disease stakeholders to help determine policy priorities Community Congress Connect with other rare disease stakeholders to help determine policy priorities Get Updates RARE Foundation Redefining Rare Disease Donate Now Careers Contact Us Privacy Policy Terms of Use Facebook Bluesky X Instagram Linkedin Youtube 1012 14th Street NW, Suite 500 Washington, DC 20005 Phone 202-697-RARE (7273) © 2026 RARE Foundation Read full Candid profile New Name, Same Commitment to Rare Diseases The EveryLife Foundation for Rare Diseases has become The RARE Foundation! Read more about our new brand and how it unifies our advocacy work on behalf of the rare disease community. Read More × ",
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