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.
Rare As One Project
Rare disease is anything but rare. As many as 7,000 rare diseases affect 400 million people globally. The vast majority are not well understood, and less than 5% 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
INADcure FoundationInfantile 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.
APBD Research FoundationAdult 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.
The Yaya Foundation4H 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 FoundationKAT6A Syndrome
The KAT6A Foundation supports the international KAT6A syndrome community.
CureGRIN FoundationGRIN Disorders
CureGRIN is a parent-led foundation committed to improving the lives of people living with GRIN disorders.
The EHE FoundationEpithelioid Hemangioendothelioma
The EHE Foundation’s goal is to connect its community to the latest research, treatment models, and events surrounding epithelioid hemangioendothelioma.