EveryLife Foundation for Rare Diseases Becomes the RARE Foundation

New name and visual identity reflect organization's role in empowering the rare disease community while reinforcing its commitment to science-based advocacy and policy

WASHINGTON, Sept. 9, 2026 /PRNewswire/ -- The EveryLife Foundation for Rare Diseases today announced it has officially rebranded as the RARE Foundation, unveiling a new name, logo, tagline, and visual identity that better reflects its role as a leading force advancing policy, advocacy, and patient community engagement for the rare disease community.

While the organization's appearance has evolved, its mission only grows stronger. For more than 16 years, the Foundation has worked alongside patients, caregivers, advocates, researchers, industry leaders, and policymakers to accelerate diagnosis, improve access to treatments, and advance equitable healthcare for the more than 30 million Americans living with rare diseases.

The organization's new name is an acronym for Relentless Advocates. Robust Evidence. It reflects the Foundation's unique approach to creating change by combining the voices of the rare disease community with science-based policy and evidence-driven advocacy. The Foundation's new tagline – Redefining Rare Disease – highlights the organization's history of and ongoing commitment to innovation in advancing stakeholder priorities.

The new brand comes at a pivotal moment for the rare disease community. More than 95 percent of rare diseases still have no FDA-approved treatment, and patients continue to face years-long diagnostic journeys, barriers to care, and significant policy challenges. The RARE Foundation remains committed to addressing these gaps through its three pillars of work: policy, advocacy, and patient community engagement.

"Our new identity reflects what has always been true about our organization – we are powered by the rare disease community," said Michael Pearlmutter, CEO of the RARE Foundation. "Every day, we witness the power of relentless advocates driving meaningful change. Our new name, the RARE Foundation, better captures who we are, what we stand for, and how we will continue making bold moves for progress together."

Amy Gaviglio, MS CGC, Board Chair of the RARE Foundation, added: "Relentless advocates are the heart of everything we do, and robust evidence is the foundation for lasting policy change. Together, they define how we accelerate diagnosis, expand access to therapies, and improve health outcomes for everyone living with a rare disease."

Since its founding in 2009, the Foundation has helped shape the national rare disease landscape through landmark policy achievements, including advancing the 21st Century Cures Act, publishing the first National Economic Burden of Rare Disease Study, leading newborn screening modernization efforts, facilitating the creation of the FDA's Rare Disease Innovation Hub, and bringing thousands of advocates to Capitol Hill through its annual advocacy events.

"Our name has changed, but our purpose has not," according to Annie Kennedy, Chief Mission Officer for the RARE Foundation. "We will continue to amplify rare voices, drive policy priorities informed by our community, and redefine what is possible for people living with rare diseases. Our rare disease community is stronger than ever, and it is our privilege to serve alongside each and every advocate."

To learn more about the RARE Foundation, explore its programs, and find out how you can get involved, visit rareadvocates.org.

About the RARE Foundation:

The RARE Foundation is a 501(c)(3) nonprofit, nonpartisan organization powered by the rare disease community to improve health outcomes by driving change through evidence-based policy, leading science-driven policy and regulatory research, activating the community to advocate for their rights and needs, and strengthening the rare disease community.

To learn more, visit rareadvocates.org and follow us on Facebook, X, Instagram, LinkedIn and YouTube.

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SOURCE RARE Foundation