This page provides information on neurodegeneration with brain iron accumulation for which most of it has been endorsed by ERN-RND members. It is structured as follows:
- ERN-RND centres
- Care standards
- Clinical studies & trials
- Patient organisations
- Study groups & networks
- Useful links, training resources, evidence and publications
- CPMS use case
According to the NBIA Disorders Association, "Neurodegeneration with Brain Iron Accumulation is a group of rare, genetic neurological disorders characterized by abnormal accumulation of iron in the basal ganglia." Please find more information on the NBIA Disorders Association's website.
- ERN-RND approved diagnostic flowcharts
Patient organisations are non-profit organisations which are patient-focused where patients and/or carers represent a majority of members in governing bodies (European Medicines Agency, 2014). Herewith, we provide a list of national and European patient organisations that work in the disease area that is covered by ERN-RND.
Study groups & networks
The listed study groups and disease networks are external networks and groups, which are leaders in the field of research for these disease groups. ERN-RND’s work is based on and complimentary to the work being done by these networks.
CPMS use case
We organise e-case meetings on neurodegeneration with brain iron accumulation in order to discuss unsolved cases after comprehensive genetic testing (including Phenocopies).
Find out more about the CPMS here