• March Newsletter 2025
  • Family Conference 2023
  • 9th Symposium 1
  • First Legacy Guardian Peggy Davis


OUR MISSION

In our drive to find a cure for Neurodegeneration with Brain Iron Accumulation (NBIA),
we provide support to families, educate the public and accelerate research with collaborators from around the world.


 

News

NBIAcure prepares to submit for FDA
approval of CoA-Z compound

 

Educational Resources

​Posters, flyers and
other educational handouts

 

Our Mission

In our drive to find a cure for Neurodegeneration with Brain Iron Accumulation (NBIA), we provide support to families, educate the public and accelerate research with collaborators from around the world.

Our Vision

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

Our Goals

  • 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.

 

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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