Welcome to the NBIA Disorders Association's FirstGiving Page! We are glad you stopped by. Please take a moment to learn a little bit about NBIA, our organization, and the important work that we do to support advances in NBIA research and provide support services to individual and families affected by NBIA.
What is Neurodegeneration with brain iron accumulation (NBIA)?
Neurodegeneration with Brain Iron Accumulation (NBIA) is a group of rare, genetic, neurological disorders characterized by an abnormal accumulation of iron in the brain and a progressive movement disorder.
Is there a cure for NBIA?
There is no cure for NBIA, nor is there a standard course of treatment. Treatment is symptomatic and supportive, and may include physical or occupational therapy, exercise physiology, and/or speech pathology.
What is the NBIA Disorders Assocation?
NBIA Disorders Association is the only patient organization in the United States dedicated to finding a cure for NBIA. We are a non-profit, 501(c )(3) organization, who for the past 19 years has served as the nation’s leader and expert in advancing awareness of these rare disorders and bringing the NBIA community together. Since we were founded over 19 years ago, the NBIA Disorders Association has been at the forefront of advancing and supporting breakthrough research through the Research Grants Program and other collaborative work, such as our role in TIRCON and the NBIA Alliance.
Our Mission: In our drive to find a cure for NBIA, we provide support to families, educate the public and accelerate research with collaborators from around the world.
Our Vision: A world in which NBIA Disorders no longer causes suffering or loss of life.
To learn more about NBIA and the NBIA Disorders Association, please visit our website at www.NBIAdisorders.org.
Who funds the NBIA Disorders Association?
The NBIA Disorders Association relies on donations to fulfill its mission. Although 250 million people worldwide suffer from rare diseases, little funding is available because each disease affects so few people. That's why many families have formed organizations, such as the NBIA Disorders Association, to promote, fund and monitor rare disease research.
Our main funding source is individuals, whether through individual giving, organization-led campaigns, or family fundraisers. We receive a small number of grants and corporate sponsorships, but no U.S. government support. That is why your donation today matters! No donation is too small - every donation make a difference.
How is my donation used?
An impressive 86 percent of every dollar spent supports research, advocacy, and support services for people affected by NBIA.
Thank you for your support!
If you would like to raise funds for NBIA Disorders Association, please click the Start Fundraising button at the top of our page to get started with a grassroots fundraising page! You can create a page, tell your story, and invite family and friends to support our cause. If you would like to fundraise for a particular event or campaign, please create a fundraising page by going to that campaign page.