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.


A world in which NBIA Disorders no longer causes suffering or loss of life.


  • 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.