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To highlight the need for continuous care and monitoring for Fabry disease patients and remind everyone of action needed for newly diagnosed patients, those in the midst of the diagnostic process or those experiencing symptoms for the first time and needing assessment We want to emphasise the need for ongoing clear and consistent communication from the centres about patients’ care and having regular appointments (in-person or telehealth)

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: