• Family Conference 2023
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  • First Legacy Guardian Peggy Davis


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

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

 

Educational Resources

​Posters, flyers and
other educational handouts

 

Dr. Ody Sibon
In the Netherlands, when a researcher becomes a full professor, a special ceremony is held where he or she gives a lecture and is then feted at a big party with dinner and drinks. Often the professor will ask for charitable donations rather than a gift. Dr. Ody Sibon, an NBIA researcher at the University Medical Center Groningen, was no exception. She asked her guests to donate to the NBIA Disorders Association and received $2,224 to support NBIA families and educate the public about NBIA disorders. We are so grateful to Sibon and her donors.

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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