We are so excited to share that the EveryLife Foundation for Rare Diseases is now the RARE Foundation!
Our new name stands for Relentless Advocates. Robust Evidence. It reflects what has always powered our work: the voices of patients, caregivers, advocates, researchers, industry leaders, and policymakers coming together to drive science-based policy change.
While our look has changed, our mission has only grown stronger. We remain committed to accelerating diagnosis, improving access to treatments, advancing equitable healthcare, and strengthening the rare disease community. And our new tagline – Redefining Rare Disease – highlights our ongoing commitment to innovation in advancing the priorities of this amazing community.
Our new identity reflects what has always been true about our organization – we are powered by the rare disease community."
Michael Pearlmutter, CEO of the RARE Foundation
For more than 16 years, you have shown what is possible when rare voices come together. As the RARE Foundation, we will continue working alongside you to redefine rare disease, making bold progress for people living with rare conditions.
Learn more! Explore our new website, updated programs, and find ways to get involved at rareadvocates.org.
