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

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

by RareConnect team published 10 months ago

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...


by berthamarlensiabatocely published 11 months ago

I noticed that the boy had some problems when he was one year old. I took him to a neurologist and he was diagnosed with psychomotor delays. This d...

Partners and Patient Groups

RareConnect is a patient-led initiative. Patient organisations partner with EURORDIS, itself an international patient organisation, to create communities and provide moderators from within their network. The following patient groups are official partners of this community.