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


by berthamarlensiabatocely published 9 days 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...

Francisco, living with PKAN2

by antonioguarda published about 1 year ago

I'm from Portugal (Leiria). My son is 6 ½ years old and we live with the same disease. Apparently he is not in pain, but he has lost almost all mob...

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.