• 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

 

Anya

February 2020

"My name is Alexis and I am a 28-year-old mother of 3 fabulous kids.

My children are age 6, 2 and 4 months, and have been my world since I became a mother. Like most mothers I have so many dreams and aspirations for my children.

Sawyer

February 2020

"Sawyer is a lively, happy one-year old boy that loves nothing more than to snuggle and laugh. Sawyer's diagnosis came quite early. Sawyer and his twin sister Sadie were born 2 months premature in January 2019. Sawyer immediately began showing signs of respiratory distress and was placed on a ventilator after being resuscitated.

Harper

February 2020

"This is our beautiful & comedic daughter Harper! She absolutely lights up the room with her infectious smile, fun loving personality & music has been a very important factor in her life since the day she was born.
Samantha

February 2020

"Samantha is our amazing four-year-old, she is also a rare disease warrior. On July 27, 2017 she was diagnosed with BPAN at just 20 months old.

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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