For more information, visit: rarediseases.org/nord-rarelaunch

More than 50% of rare diseases lack organized representation or support, leaving patients on their own to search for resources and make connections. NORD’s RareLaunch Program exists to fill this gap and to provide education and training to empower leaders to start needed rare disease nonprofits. RareLaunch also supports existing 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. RareLaunch workshops will teach participants how to establish a 501(c)(3) organization, recruit a board of directors, raise funds and advance research. RareLaunch helps organizations become “research ready” by supporting the establishment of disease registries and natural history studies.

This project is made possible in part by a grant from the Chan Zuckerberg Initiative Donor-Advised Fund (DAF) of Silicon Valley Community Foundation.

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