Welcome - Neurodegeneration with Brain Iron Accumulation NBIA Community

What is Neurodegeneration with Brain Iron Accumulation NBIA ?

Neurodegeneration with Brain Iron Accumulation (NBIA) comprises a group of rare, genetic neurodegenerative disorders. Common features among all individuals with NBIA include iron accumulation in a part of the brain called the basal ganglia, and a progressive movement disorder. 

This web platform aims at strengthening and enhancing our international community of NBIA patient organizations who have joined forces in the NBIA ALLIANCE. We share common goals in supporting affected families and promoting research. This site on RareConnect provides current information on NBIA, the challenges of living with NBIA, the progress in NBIA research and the main activities in our NBIA lay advocacy community.

Source: NBIA Alliance

Neurodegeneration with Brain Iron Accumulation NBIA Resources

More members stories

Latest Member Stories

Living with PKAN in Italy

by carladidio published 3 months ago One comment

Hello everyone, my name is Carla, I was born and I live in Milan and I was diagnosed with NBIA, specifically PKAN. The first symptoms began at age ...

Brother, sister cope with NBIA as active, happy young adults

by RareConnect team published 8 months ago One comment

Looking back, there were signs that my brother, Brian, and I were heading to a medical crisis. But no one thought of NBIA (Neurodegeneration with B...