Supporting NBIA Families
for over 28 Years
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.
If you or a loved one has an NBIA Disorder, we can help!
If your loved one is newly diagnosed with some form of NBIA, your family is no longer alone in coping with this disorder. If you have been living with a diagnosis but never reached out before, welcome to the NBIA Disorders Association. We are here to help you.
We provide emotional support to families through our Networking Program, Facebook group and Zoom Meet Ups. These programs put you in touch with other families and enable you to ask questions about treatments and other matters. You can learn from others how they cope with a rare disorder and care for their loved one.
You likely have many questions about your diagnosis and connecting with an NBIA Center of Excellence near you can help with clinical guidance.
We have Family Conferences every two years that bring together families from around the world. NBIA researchers and other experts attend and share their knowledge with us. We have clinical sessions with the leading NBIA experts where you can hear the latest updates on how to best care for your loved one with NBIA.
Check out the family conferences link with recorded sessions from previous conferences that you might find helpful.
We hope you will join our NBIA community and be a part of our efforts to support families, educate the public about NBIA and spread awareness in our search for a cure for all NBIA disorders. Everyone can make a difference in his or her own way.
