CZI awards $1.3 million to support the global rare disease community

Today, the Chan Zuckerberg Initiative (CZI) announced $1.3 million in funding to support the global rare disease community through two distinct grants to the U.S.-based National Organization for Rare Disorders (NORD) and EURORDIS-Rare Diseases Europe. These grants will support organizational capacity building programs and awareness campaigns for Rare Disease Day, respectively, and are part of CZI’s Rare As One Project, aimed at supporting the work that patient communities are doing to accelerate research and drive progress in the fight against rare diseases.

“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.”

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.

“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, President and CEO of NORD. “We are thrilled that CZI is helping to make that happen by partnering with NORD and EURORDIS as we work to unite and improve the lives of over 350 million people living with rare diseases worldwide.”

EURORDIS is a patient-driven alliance representing over 900 rare disease patient organizations in 72 countries. CZI funding will support the development of two enhanced Rare Disease Day campaigns in 2021 and 2022 to continue to build, strengthen, and unify a movement to raise awareness of rare diseases across the globe.

“We are pleased to count CZI among the funders of Rare Disease Day, the worldwide grassroots awareness campaign for people living with a rare disease and their families. 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. “Rare Disease Day is a globally coordinated movement on rare diseases, initiated in 2008 and led by EURORDIS and 60 national alliance patient organization partners working towards equity in social opportunity, healthcare, and access to therapies.”

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.

The two grants are as follows:

National Organization for Rare Diseases (NORD): $750,000

This grant supports the development of two critical capacity-building programs that will be made accessible to the broader rare disease community:

Rare Launch: Forming a Nonprofit: This program will connect patient communities, provide education and training on governance and best practices, and set organizations on the path to sustainable development. Topics include establishing a 501(c)(3), leadership development, board and scientific and medical advisory board recruitment, communications and social media strategy, and patient engagement.

Becoming Research Ready: This program will assist patient communities to understand and support scientific research. Topics include working with researchers, the role of natural history studies, support for registry and study development, understanding the drug development process, engagement in clinical trials, and managing research grants.

EURORDIS-Rare Diseases Europe: $533,571

This grant supports 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 general public. The campaigns will also support:

• Strategic growth in the number and activity of international Rare Disease Day partners;
• The development and dissemination of core campaign materials across diseases, borders, cultures, and languages to include all those affected by rare disease; and
• The development of a global Rare Disease Day campaign in 2021, fostering recognition and celebration for the worldwide Rare Disease Day community.

Earlier this year, CZI announced $13.5 million in funding to 30 different organizations, including groups dedicated to finding cures for a broad range of diseases such as rare cancers and neurodegenerative and autoimmune diseases. With guidance from patient communities, rare disease experts, and advocacy organizations, the Rare As One Project helps communities of patients, researchers, and clinicians work together to advance progress against their diseases and scale these efforts.

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