This page provides information on ataxia 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
Ataxia is derived from the Greek word meaning “lack of order”, and in neurology it refers to movements that are poorly organized and lack of coordination. The cerebellar ataxias are a group of heterogeneous disorders characterized by progressive ataxia due to degeneration of the cerebellum and its afferent and efferent pathways. Etiologic classification includes acquired forms of known causes, neurodegenerative forms of unknown origin, and a large number of inherited genetically determined forms (Mariotti, 2018).
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 disease networks and study groups 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.
Useful links, training resources, evidence and publications
- Publications on medical management and pharmacological treatment
- Publications on physical therapy and neurorehabilitative treatments
- Publications on speech and communication
- Consensus papers