This page provides information on frontotemporal dementia 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 Dr Jonathan Rohrer & Dr Jason Warren from the Dementia Research Centre of the University College London, Institute of Neurology, "FTD is a group of conditions caused by loss of cells mainly in the frontal and temporal lobes of the brain. The main symptoms are a progressive change in personality and behaviour or progressive deterioriation in language abilities." Please find more information on rare dementia support's website.
- ERN-RND approved diagnostic flowcharts
- ERN-RND recommended disease rating scales
- ERN-RND endorsed guidelines
- Registries to which ERN-RND members contribute
- Other registries
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.