How NBIA Disorders Association is funded

We rely on donations to meet our goals of providing support to NBIA families, educating the public about these rare disorders and supporting research with collaborators from around the world.

How are donations used?

We are dedicated to helping NBIA families. Some of the ways we do this are through our website that has the latest news and information about NBIA; social media including a Facebook group for NBIA families; webinars on topics of interest; a newsletter that we publish online three times a year; disease specific Zoom sharing meetings; and a Networking Program for NBIA families. We also hold family conferences every two years where families come together to socialize, provide emotional support and information to each other, and hear from researchers and other experts.

We have organized two scientific workshops and have actively participated in all research symposiums for NBIA. We have fully funded 41 research grants valued at $30,000 to $150,000 each and collaborated in funding 4 others with some of our NBIA Alliance partners. We have helped financially support the TIRCON International Patient Registry and Biobank. Since 2002, we have funded 2.4 million in NBIA research as of January 2022.

Where do the donations go?

We are proud that our administrative and fundraising costs are very low compared with those of many charities. To learn more about the work we do, our financial history and spending, we invite you to review the IRS Form 990’s that are available here.

More information about NBIA Disorders Association expenditures for previous years is available here:
2018-2008 Expenditures




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