• 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

 

Barbara

February 2020

"Our daughter Barbara Claire started slowing down at the age of 29. 9 months later she gave birth to Lawrence, who is now 4 years old. At first, she was still driving and could take him to toddler groups and the park. Over the last 2 years she has deteriorated so much she can no longer play with him; her hands are clawed inwards. She can't walk unaided, feed or dress herself and is struggling to eat and now her speech is affected. We are desperate for support or help to improve her quality of life as my husband and I also both work full time as well as caring full time for Barbara and Lawrence."

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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