• 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

 

Elijiah

February 2020

"This is Elijah McBurney. He was diagnosed with BPAN when he was 19 years old. He is now 23. He began his life quite normally, reaching his milestones on time his first year. He was walking at 13 months and just slightly behind in his language skills at that point.

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.

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.

Kinsley

February 2020

"Our story began when our daughter was around 7 months of age when she stopped hitting milestones. Our pediatrician said give it time. She’s just going at her own pace. As each month passed, we became more and more worried. Our pediatrician finally agreed with us that she was indeed behind.

Partners

nbia alliance logo1NBIA Cure logoRare Disease Day PartnerTIRCON

Genetic Alliance logoNORDEURORDISGlobal Genes


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