Newly Diagnosed Information

Dear Friend,

The day you learn that you or a loved one has an NBIA Disorder might be the worst day of your life. We understand because we’ve been there. Take heart; you have come to the right place. The NBIA Disorders Association is dedicated to finding a cure for these rare disorders and supporting you in this challenging journey. Welcome. We are glad you found us.

We represent a group of families and researchers who are an excellent resource to those facing a diagnosis of NBIA. You no longer have to cope with this alone. From all over the world, NBIA families communicate with each other through our various support programs.

We can help you:

  • Understand the diagnosis and symptom management options
  • Keep updated on research efforts
  • Connect with other families that truly understand what you are going through

Getting Started:

We welcome you and your family to our NBIA Community and hope that we can meet your needs at this difficult time of learning about and accepting an NBIA diagnosis. Right now, your life has been up-ended. But as time passes, a "new normal" evolves, and we can help you reach that stage, too.

There is hope through research. The NBIA Disorders Association is working every day to promote research seeking a treatment or cure for all of our NBIA disorders. Please join us in our quest and let us know how we can help.


Signature PatriciaWood

Patricia Wood