Management of rare movement disorders in Europe: outcome of surveys of the European Reference Network for Rare Neurological Diseases

Author:

Painous C.12ORCID,Os N. J. H.3,Delamarre A.45,Michailoviene I.6,Marti M. J.12,Warrenburg B. P.3,Meissner W. G.4578,Utkus A.6,Reinhard C.910,Graessner H.910,Tijssen M. A.1112ORCID

Affiliation:

1. Neurology Service Institut d'Investigacions Biomèdiques August Pi i Sunyer (IDIBAPS) Hospital Clínic Universitari University of Barcelona BarcelonaSpain

2. Centro de Investigación Biomédica en Red de Enfermedades Neurodegenerativas (CIBERNED) Barcelona Spain

3. Department of Neurology Donders Institute for Brain, Cognition and Behaviour Radboud University Medical Center Nijmegen The Netherlands

4. Institut des Maladies Neurodégénératives UMR 5293 Université de Bordeaux BordeauxFrance

5. UMR 5293 CNRS, Institut des Maladies Neurodégénératives Bordeaux France

6. Faculty of Medicine Institute of Biomedical Sciences Vilnius Vilnius University Lithuania

7. Department of Medicine University of Otago ChristchurchNew Zealand

8. New Zealand Brain Research Institute Christchurch New Zealand

9. Institute for Medical Genetics and Applied Genomics University of Tübingen TübingenGermany

10. Centre for Rare Diseases University Hospital Tübingen Tübingen Germany

11. Department of Neurology University Medical Center Groningen University of Groningen GroningenThe Netherlands

12. Expertise Center Movement Disorders Groningen University Medical Center Groningen Groningen The Netherlands

Publisher

Wiley

Subject

Neurology (clinical),Neurology

Reference14 articles.

1. European Union.Regulation (EC) No.141/2000 of the European Parliament and of the Council of 16 December 1999 on orphan medicinal products;2000.https://eur‐lex.europa.eu/LexUriServ/LexUriServ.do?uri=OJ:L:2000:018:0001:0005:EN:PDF(accessed 22/11/2019).

2. GraessnerH BrunelleA ReinhardC HermannsS PostA.European reference network for rare neurological diseases – ERN‐RND.Information Brochure2020.http://www.ern‐rnd.eu/wp‐content/uploads/2020/05/ERN‐RND_info_brochure_2020.pdf(accessed 04/04/2020).

3. International Cooperation to Enable the Diagnosis of All Rare Genetic Diseases

4. Rare diseases and orphan drugs

5. Management of dystonia in Europe: a survey of the European network for the study of the dystonia syndromes

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