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.
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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.
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
Infantile Neuroaxonal DystrophyINADcure Foundation’s mission is to fund research that will lead to treatments and a cure for diseases caused by the impaired PLA2G6 gene.
APBD Research Foundation
Adult Polyglucosan Body DiseaseAPBD 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.
The Yaya Foundation
4H LeukodystrophyThe 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
KAT6A SyndromeThe KAT6A Foundation supports the international KAT6A syndrome community.
CureGRIN Foundation
GRIN DisordersCureGRIN is a parent-led foundation committed to improving the lives of people living with GRIN disorders.
The EHE Foundation
Epithelioid HemangioendotheliomaThe 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
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.
News & Stories
Interested in learning more about our work on rare diseases? Get the latest information from the links below.
“Traditional research and funding approaches are fragmented. Patients have the power to inspire physicians and researchers, organize networks, and contribute data and funds.”
“Patients know their disease better than anyone else. They can help advance treatments and cures and are the secret sauce for successful research and biopharma partnerships.”
“Families deserve an answer to ‘how did this happen?’ Knowing the gene that causes their child's disease provides emotional relief and opportunities to connect with others.”
Science Funding
Learn more about funding opportunities.
Hear Rare Disease Stories
Listen to The Story Collider podcast featuring stories about patients who are driving progress against rare disease.