My Nonprofit Reviews

Our daughter, who was only 20 months old at the time, was given a diagnosis of BPAN two years ago.Being told that your child has an ultra-rare, neurological degenerative disorder is very isolating. Being told that the condition is so rare, the doctors didn't have much information on it was devastating. Then we were told to contact the NBIA disorders association and it made us feel like we were not alone and that there are other families facing similar struggles and hardships. The NBIA disorders association has been a great tool for our family to contact with other families, contact with specialist and keep up to date on the latest research and information available. I am thankful such an organization exists.