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CZI Donates $1.3 Million to Rare Disease Advocacy Groups

NORD and EURORDIS receive partnership grants to “lift up patient advocates” during an uncertain time.

logos for the National Organization for Rare Disorders (NORD) and EURORDIS

The Chan Zuckerberg Initiative (CZI) is continuing its support for the rare disease community with a $1.3 million grant to the National Organization for Rare Disorders (NORD) and EURORDIS-Rare Diseases Europe.

The funds, given through CZI’s Rare As One Project, are intended to help patients and families in accelerating research, build awareness campaigns and expand programs. Rare as One, which previously awarded grants to smaller groups, wants rare disease organizations to have the infrastructure to be effective partners in research.

“With these new grants, we’re honored to partner with two organizations that are dedicated to improving the lives of millions of individuals living with rare disease,” said Tania Simoncelli, CZI Science Policy Director and Rare As One Project lead. “NORD and EURORDIS are leaders in the rare disease community and provide critical support, training, and mentorship for their member organizations. As we fight COVID-19, it is more important than ever to support their efforts to lift up patient advocates and strengthen rare disease organizations, many of whom are vulnerable during this uncertain time.”

NORD, a coalition of more than 300 member organizations in the United States, will use the funds to directly support patient advocacy groups in developing their capacity to engage in research and build communities of rare disease patients, researchers and clinicians working together to advance progress against their diseases. 

“Building capacity within rare disease organizations and providing opportunities to participate in research through natural history studies are key to supporting our collective mission to find new treatments and cures,” said Peter L. Saltonstall, NORD CEO.

EURORDIS is a patient-driven alliance representing more than 900 rare disease organizations in 72 countries. CZI funding will support two enhanced Rare Disease Day campaigns in 2021 and 2022 to raise awareness of rare diseases across the globe.

“With this grant, we will amplify the patient voice across borders and diseases to accelerate change for people around the world,” said Yann Le Cam, CEO of EURORDIS-Rare Diseases Europe.