• 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

 

Naila

February 2020

"Naila is someone who will love you, no matter who or what you are. And, just in second or two - the magic is on you, because you are in love with her too. Her favorite color is blue, favorite animal - dog/husky and dearest toy - Pikachu. Naila lives in Bosnia and Herzegovina, she is 24 and has NBIA- MPAN form. She is real Iron girl, the strongest one! MPAN took her ability to walk but will never ever take her ability to be a sunshine, to bring happiness and share smiles, hugs and kisses - to me and you - no matter who or what you are, imagined or real.

"Everyday that I wake
something wonderful waits for me
the sunshine of your smile,
that I what I wake to see.
Outside maybe gloomy,
dark clouds may mar the blue,
but then I look around,
and what do I see,
the sunshine of your smile,
that warms the heart of me.
No tears of sorrow,
at what tomorrow might bring,
because your face is lit up,
with the sunshine of your smile."
by David Harris"

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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