Rare As One Project

Rare disease is anything but rare. More than 7,000 rare diseases affect over 300 million people globally. The vast majority are not well understood, and less than 5 percent have approved treatments. Yet worldwide, patients are meeting these challenges head-on. The Rare As One project is committed to uniting these communities in their quest for cures.

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Become a Rare As One research participant

Meet the Rare As One Network

We support patient-led organizations working to improve the lives of people affected by rare disease. Learn more about our grantees below.

INADcure Foundation president and co-founder holding her young daughter, who has the rare disease Infantile Neuroaxonal Dystrophy, as both smile.

INADcure Foundation

Infantile Neuroaxonal Dystrophy

INADcure Foundation’s mission is to fund research that will lead to treatments and a cure for diseases caused by the impaired PLA2G6 gene.

Group of smiling APBD Research Foundation cyclists wearing bicycle helmets and holding a sign that says "APBD Tour de Friends."

APBD Research Foundation

Adult Polyglucosan Body Disease

APBD Research Foundation is dedicated to increasing public awareness and understanding of Adult Polyglucosan Body Disease and supporting research studies that may lead to new treatment options and a cure.

Yaya Foundation father holding a baby with 4H Leukodystrophy.

The Yaya Foundation

4H Leukodystrophy

The Yaya Foundation for 4H Leukodystrophy fights for children with 4H Leukodystrophy by building an ecosystem of patients, families, researchers, clinicians, scientific experts, and supporters.

KAT6A Foundation family with mother, father and four children standing in front of a display that says "GENES DNA."

KAT6A Foundation

KAT6A Syndrome

The KAT6A Foundation supports the international KAT6A syndrome community.

CureGRIN Foundation mother and young son with GRIN disorder laying outdoors on a blanket, smiling.

CureGRIN Foundation

GRIN Disorders

CureGRIN is a parent-led foundation committed to improving the lives of people living with GRIN disorders.

Two smiling women with arms around each other wearing blue t-shirts for The EHE Foundation (Epithelioid Hemangioendothelioma).

The EHE Foundation

Epithelioid Hemangioendothelioma

The EHE Foundation’s goal is to connect its community to the latest research, treatment models, and events surrounding epithelioid hemangioendothelioma.

Our Strategic Partners

We’re proud to work alongside a number of distinguished organizations that share our goal of finding treatments and cures for rare diseases.

Our Approach

Patient communities are the agents and architects of their own change. We aim to lift up rare disease communities, providing them with resources and tools to be more effective advocates for—and partners in—research.

Strengthen Community

Rare disease patients around the world are building powerful communities and research networks. Our goal is to elevate and strengthen these communities and connect them with one another.

Build Capacity

Patient communities are the agents and architects of their own change. We aim to lift up rare disease communities, providing them with resources and tools to be more effective advocates for, and partners in, research.

Promote Collaboration

Collaboration is key to accelerating progress against disease. That’s why we’re working to bridge learnings within and across diseases—and among patients, researchers, clinicians, and other key community members.

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Science Funding

Learn more about funding opportunities.

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Hear Rare Disease Stories

Listen to The Story Collider podcast featuring stories about patients who are driving progress against rare disease.