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Family Support Overview

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 through our Group Forum and Networking Program. Those 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.

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 private clinic appointments in conjunction with the conferences so you can speak with doctors knowledgeable about NBIA and receive treatment advice specific to your situation. Check out the family conferences link with information from our most recent conference.

We hope you will join our NBIA community and be a part of our efforts to support the families, educate the public about NBIA and spread awareness in our search for a cure. Everyone can make a difference in his or her own way.