• 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

 

Jordyn

February 2020

"Jordyn was born on April 18th, 2002. She was four weeks early but was ready to meet her two older siblings. It wasn't until Jordyn’s 1st birthday that she ran a very high fever and had multiple seizures. Three weeks in the hospital after numerous testing they sent us home with an epilepsy diagnosis with medications to treat it.

Sarah

February 2020

"My daughter Sarah is 23 years old. She was diagnosed with BPAN on Valentine's Day 3 years ago. Until that point she carried the diagnosis of Spastic Quad CP with autistic features. Sarah showed very early delays and then unfortunately her slow development plateaued at age 3.

Kinlee

February 2020

"Kinlee will be 4 years old Feb. 27, she is my granddaughter that I have had custody of since birth. I also have had her sister since birth, and she will be 6 in June. I am a pediatric nurse and noticed Kinlee was not holding her bottle, rolling over, sitting up and reaching many milestones in a normal time frame.

Dahlia

February 2020

"Since Dahlia was 8 months old, we were concerned there was something wrong. She was a little floppy, wasn’t sitting up yet, and she did a funky thing with her eyes; she would look out of the corner of her eyes up at lights or sunshine through the window and turn her head all the way to the side while keeping her eye on the light, similar to stimming.

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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