Welcome to the NBIA Disorders Association website. Whether you are newly diagnosed with Neurodegeneration with Brain Iron Accumulation or caring for a loved one with an NBIA disorder, you’ve come to the right place. Our organization is your No. 1 resource for education, advocacy, research and support. You are no longer alone in coping with NBIA.
If you are a physician considering a diagnosis of NBIA or a lay person seeking information on these disorders, we can provide you with the most comprehensive information and support.
If you are a scientist interested in conducting research on NBIA, we offer competitive "seed money" grants.
The organization was established because knowledge of what was then called Hallervorden-Spatz Syndrome was very limited. There was nowhere to turn to for help and support. We changed this by creating the Hallervorden-Spatz Syndrome Association in 1996. It is a 501 (c)(3) non-profit, incorporated in California, led by president and founder Patricia Wood.
In 2003, we changed our name to NBIA Disorders Association to more accurately reflect the growing knowledge about these disorders and to disassociate ourselves from Drs. Hallerverorden and Spatz, two German doctors notorious for their unethical activities during World War II in Nazi Germany.
Our organization is an international network of parents and researchers who share knowledge, experience and emotional support. We act as a clearinghouse of information on all aspects of NBIA disorders.
We work to facilitate research on these very rare disorders and have a Scientific & Medical Advisory Board committed to helping us meet this goal.
Thank you for taking time to visit our website. Please contact us if you experience any difficulties finding information.