• Family Conference 2023
  • DecNewsletter
  • 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

 

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.

Gráinne

February 2020

"Gráinne is our only child. She is now 10 years old. The first time we suspected anything was when she was about two years old and a developmental check indicated she didn't have as many words as she should have. We thought nothing more of it as the nurse wasn't overly concerned.

Everett

February 2020

"Our NBIA story began with a BPAN diagnosis for our oldest son, Everett in 2013. Everett was not meeting his developmental milestones and eventually started having physical signs of complex seizure disorder. For more than two years we thought Everett was only ten in the whole world with this diagnosis.

Malachi

February 2020

"My son Malachi was born April 28, 2016 he was a happy baby boy. He was cruising around couches, sitting up by himself , playing and talking. At 14 months Malachi was not able to do those things anymore.

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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