PATIENTS and FAMILIES: RND Information

Due to the low prevalence and complexity of rare neurological diseases, as well as to the nature of small and scattered patient populations, ERN-RND has been established to bring real added value to rare disease patients. By ensuring doctors have the most recent and expert knowledge possible, they will be better informed to make decisions on how to adapt treatment and care pathways. This in turn contributes to improvements in clinical outcomes and the quality of life of people living with a rare disease.

As patients play a major role in disseminating expert knowledge and making it accessible and used we provide respective information on this web site.

How to contact ERN-RND expertise centres

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Patient Advocates

EURORDIS has established a European Patient Advocacy Group (ePAG) for each ERN disease grouping. Patient organisations can become ePAG member organisations and patients can become ePAG representatives (2016 and onwards).

The ERN-RND ePAG comprises the following members:

Members Organisation
Cathalijne van Doorne euro-Ataxia and European Federation of Neurological Associations
Mary Kearney Friedreich’s Ataxia Research Alliance Ireland (FARA)
Tsveta Schyns-Liharska European Network for Research on Alternating Hemiplegia, ENRAH
Astri Arnesen European Huntington Association
Robert Scholten Apeldoorn Dystonia Europe
Lori Renna Linton Euro-HSP
Amanda Rose raredementiasupport.org UK patient group
John McFarlane European Polio Union

Patient Organisations

Ataxia

Dystonia

Genetic parkinsonism

  • – none –

Hereditary spastic paraplegia

Huntington

Leukodystrophies

Multiple System Atrophy

Progressive Supranuclear Palsy

Disease definitions

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Cross border healthcare

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