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
Latest Member Stories
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...
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.