Creation and implementation of a European registry for patients with McArdle disease and other muscle glycogenoses (EUROMAC registry)

International patient registries are of particular importance for rare disorders, as they may contribute to overcome the lack of knowledge derived from low number of patients and limited awareness of these diseases, and help to learn more about their geographical or population-based specificities, w...

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Hauptverfasser:	Pinós Figueras, Tomàs, Andreu, Antoni L, Bruno, Claudio, Hadjigeorgiou, Georgios M, Haller, Ronald G, Laforêt, Pascal, Lucia, Alejandro, Martín, Miguel A, Martinuzzi, Andrea, Navarro Villanueva, Carmen, Oflazer, Piraye, Pouget, Jean, Quinlivan, Ros, Sacconi, Sabrina, Scalco, Renata S, Toscano, Antonio, Vissing, John, Vorgerd, Matthias, Wakelin, Andrew, Martí, Ramon A, Universitat Autònoma de Barcelona
Format:	Artikel
Sprache:	eng
Schlagworte:	Glycogen storage disease International registry McArdle disease Metabolic diseases Myopathy Rare diseases
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