Getting global Rare disease Insights through Technology Join the first Canadian app-based clinical trial for patient with metabolic disorders
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development of a new Patient Needs Questionnaire In France, two associations actively represent Fabry patients, participate in and promote medical research: Association des Patients de la Maladie de Fabry (APMF, apmf-fabry.org) and Vaincre les Maladies Lysosomales (VML, www.vml-asso.org).
The Perspectives and Recommendations from the Rare Disease Community' Raquel Castro, Erwan Berjonneau and Sandra Courbier from Eurordis have published an editorial piece on the International Journal of Integrated Care entitled: