All Neurodegeneration with Brain Iron Accumulation Patient Groups
Here's a selection of information from patients & professionals to better understand Neurodegeneration with Brain Iron Accumulation.
The Alliance is an umbrella organization for NBIA lay advocacy groups started in January, 2012. The countries below are represented with member groups.
We would like to expand our Alliance to other countries, so if you are interested in starting a group, please contact one of our members. We will be happy to help you with organizational questions and support in finding other NBIA families in your country. Belonging to our Alliance will empower your organization and give you strength when promoting NBIA awareness in your country.
While each country has their own legal entity, we share common goals in supporting NBIA families and promoting research, and are working together on a strategic plan for the future that we all endorse. We display the Alliance logo on our websites and in literature to show we are members of a worldwide collaboration.Contact NBIA Alliance
Contact: Angelika KluckenContact Hoffnungsbaum e.V.
Contact: Maayke Arends & Alie NagelContact Stichting Ijzersterk
ParisContact Association Internationale de Dystrophie Neuro Axonale
Contact: Jean-loup Vasseur
Contact: Natale & Fabrizia ScaliseContact Associazione Italiana Sindromi Neurodegenerative da Accumulo di Ferro
Contact: Antonio LopezContact ENACH Asociación
Contact: Patricia WoodContact NBIA Disorders Association USA
Contact: Michelle Sheppard-WhalenContact NBIA Canada