• 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

 

Clayton

February 2020

"Clayton was born in 2017 from Hong Kong. In August 2017, I found that Clayton was slower than children of the same age. Later, I discovered that Clayton had more problems, I was so lost at that time, I could only shout secretly in the middle of the night, I knew I couldn't do it.

When Clayton was 14 months, I met the move physiotherapy center-Raymond Cheung, so I saw the sunshine ☀️ so that I can take the initiative and hope to help Clayton all the way. At the end of 2019, Clayton was diagnosed with a rare genetic disease Neurodegeneration with Brain Iron Accumulation 5 (NBIA5), there is currently no effective treatment for NBIA in the medical profession."

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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