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NORD Nonprofit Surveys

Since 1983, NORD has provided the rare disease community with support in building the capacity of disease-specific organizations. NORD’s RareLaunch® program was developed to help people “launch” various capacity-building initiatives, from creating a nonprofit that represents their patient community to administering research grants or even launching a natural history study to serve as a catalyst for academic research. Through the RareLaunch® program, NORD is hosting nonprofit workshops for those new to nonprofits and those with nonprofit organizations who are new to research and registries.

Fill out this 15-minute survey to let us know your interest in starting a nonprofit or starting a rare disease patient registry.


Starting a Nonprofit Organization

Are you affected by a rare disease that does not have a nonprofit organization to serve the community?
Are you interested in learning more about how to start one?

Take the survey


Start Your Research

Are you involved in a nonprofit organization that wants to take the leap into driving research and patient registries for a rare disease?

Take the survey


Our survey is open, but the drawing for prizes is closed. Thank you for sharing our feedback with NORD!