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About RARE Foundation

The RARE Foundation is a community of relentless advocates working to improve the quality of life for all people living with rare diseases. We raise our voices and leverage robust, science-based evidence to accelerate equitable treatments and diagnosis.

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Who We Are

Relentless Advocates, Robust Evidence,
Redefining Rare Disease

The RARE Foundation is a community of relentless advocates for rare diseases. Our community comprises patients and their loved ones, caregivers, and other rare disease stakeholders and champions.

Together, we drive science-based legislation, guidelines, and initiatives that accelerate treatments and diagnosis, and improve the quality of life for all people living with rare diseases.

Our Vision

We envision a world where barriers do not exist for rare disease patients through access to accurate and timely diagnosis, appropriate and comprehensive treatment, and affordable and equitable healthcare.  

To ensure advancements are shaped by lived experience, we advocate at the state and federal levels to fill gaps across the landscape and make bold moves for progress—expanding access and addressing barriers to care. By activating our unique power and amplifying our stories, we achieve more equitable policies and opportunities for the rare disease ecosystem.

The RARE Foundation (formerly known as EveryLife Foundation for Rare Diseases) was founded in 2009 by Dr. Emil Kakkis, a renowned geneticist who has dedicated his life to the development of novel treatments for rare diseases.

Our Mission

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. 

For more than 16 years, the RARE Foundation has been a leader in the rare disease community, identifying unmet needs, and designing a path forward—no matter what. We pride ourselves on offering guidance to other organizations in the field and holding the government accountable when policies cause our community harm.

Through our three pillars of work, advocacy, policy, and patient engagement, we convene patients and officials across legislative bodies, regulatory agencies, and biotech and pharmaceutical industries, striving to break down barriers.

The RARE Foundation is always evolving and growing, based on our rare disease community’s needs, priorities, and opportunities.

Help us amplify the voices of the rare disease community to drive meaningful change and influence policy.

Our Approach

The RARE Foundation is redefining what it means to live with a rare disease. We enable patients and their loved ones to find their unique outlet as advocates and share their experiences. From legislative policy and community organizing to creative expression and community-based groups, everyone affected by rare diseases can find their place at the RARE Foundation, no matter where they are in their personal journey. Sharing experiences is a powerful way to raise awareness for rare diseases, reach new families, shape policy, and transform lives.

We host a variety of programs so everyone in our community—patients, loved ones, caregivers, and champions—can find their niche and get involved. Each program provides a unique vehicle for engagement; we encourage our community members to share their voices and advocate for progress in ways that work best for them and reflect who they are.

In addition to our programming, the RARE Foundation also provides our community and patient advocacy organizations with a variety of resources, including personal advocacy resources and media tools, and resources that support communities who are navigating therapy development, access to approved therapies, and newborn screening evidence development.