• Researchers in laboratories
  • slide rch
  • Untitled design
  • Family photos
  • NBIA Research

    Learn More about our Research Program.


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  • Rare Champions of Hope

    Dr. Susan Hayflick wins award.


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  •  Upcoming Funding Opportunities

     


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  • Living with NBIA during the COVID-19 Pandemic

    Family stories and Webinar recording


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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.


 

News

​New $115,000 grant awarded
to study possible PKAN therapy

 

Educational Resources

​Posters, flyers and
other educational handouts

 

How Can You Get Involved?

Donate Become A Volunteer Connect With Us

Partners

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Genetic Alliance logoNORDEURORDISGlobal Genes


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