RARE Daily

Chan Zuckerberg Initiative Awards $1.3 Million to Support the Global Rare Disease Community

July 16, 2020

Chan Zuckerberg Initiative Awards $1.3 Million to Support the Global Rare Disease Community

Rare Daily Staff

The Chan Zuckerberg Initiative awarded $1.3 million in funding to support the global rare disease community through two different grants to the U.S.-based National Organization for Rare Disorders and EURORDIS-Rare Diseases Europe.

The grants will support organizational capacity building programs and awareness campaigns for Rare Disease Day and are part of CZI’s Rare As One Project, which supports the work of patient communities to accelerate research and drive progress in the fight against rare diseases.

This funding will help NORD, a coalition of more than 300 member organizations in the U.S., to directly support patient advocacy organizations in developing their capacity to engage in research and building communities of rare disease patients, researchers, and clinicians working together to advance progress against their diseases.

As umbrella organizations, NORD and EURORDIS have established a long-standing collaboration over the years, actively working together to coordinate and advance the rare disease field. Their partnership demonstrates the potential of amplifying and strengthening the rare disease community across the globe.

A grant of $750,000 to NORD will support the development of two capacity-building programs that will be made accessible to the broader rare disease community. The first is Rare Launch: Forming a Nonprofit, a program that will connect patient communities, provide education and training on governance and best practices, and set organizations on the path to sustainable development.

The second program supported by the grant is called Becoming Research Ready, which will assist patient communities to understand and support scientific research.

A grant of $533,571 to EURORDIS-Rare Diseases Europe will support the development of two enhanced Rare Disease Day campaigns in 2021 and 2022 to build, strengthen, and unify a movement to raise awareness of rare diseases.

Rare Disease Day takes place on the last day of February each year. These campaigns will be directed at those affected by rare disease, caregivers, researchers, policy makers, and the public.

“NORD and EURORDIS are leaders in the rare disease community and provide critical support, training, and mentorship for their member organizations,” said Tania Simoncelli, CZI Science Policy Director and Rare As One Project lead. “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.”

 

Photo: Tania Simoncelli, CZI Science Policy Director and Rare As One Project lead

 

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