NBIA DISORDERS ASSOCIATION

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 further 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 since our founding in 1996 has served as the nation’s leader and expert in advancing awareness of these rare disorders and bringing the NBIA community together. 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 cause suffering or loss of life. 

Our Goals:

  • To provide a supportive environment in which people affected by NBIA and their loved ones can share needs, concerns and experiences.
  • To share up-to-date information about treatment and care options with all members of the NBIA community.
  • To increase recognition of NBIA among clinicians and other healthcare professionals and promote early diagnosis and access to optimal care.
  • To participate effectively in the international NBIA community and foster collaboration with our affiliated NBIA lay advocacy groups in other countries.
  • To build an expanding base of committed contributors who will help provide funds to achieve our vision.
  • To encourage, guide and fund research to improve understanding, diagnosis and treatment, and ultimately, find a cure for NBIA disorders.

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 family support and 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 DONATE, click the green Donate button on the right.

If you would like to raise funds for NBIA Disorders Association, we encourage you to chose one of our campaigns or events, and then create your own fundraising page.

This allows you to tell your story, and invite family and friends to support the cause.