L'ABP Wilson travaille en collaboration avec le Centre de Référence Maladies Rares - Maladie de Wilson (CRMR Wilson) pour garantir la prise en charge des patients et soutenir la recherche scientifique sur cette maladie génétique rare du métabolisme du cuivre et son traitement.
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La nostra Associazione si propone di informare le famiglie e supportare, ove possibile, anche professionisti o enti che si confronteranno con questa rara malattia genetica.
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Der Morbus-Wilson-Verein begrüßt seine Besucher auf seiner Homepage. Hier finden Sie Informationen rund um Morbus Wilson und unseren Verein. Und natürlich haben Sie auch als Nichtmitglied die Möglichkeit, sich an unserem Forum zu beteiligen. Zusätzlich steht für Mitglieder des Vereins ein erweiterter Bereich zur Verfügung, in dem Sie weiterführende Informationen, Veranstaltungshinweise und vieles mehr finden.
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In 2021, Polish patients began a process of collaboration with Dr Socha. The creation of an official patient organisation is still in progress.
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Our mission is to improve the care of rare liver disease patients throughout Europe.
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EURORDIS – Rare Diseases Europe is a unique, non-profit alliance of over 1000 rare disease patient organisations from 74 countries that work together to improve the lives of over 300 million people living with a rare disease globally. By connecting patients, families and patient groups, as well as by bringing together all stakeholders and mobilising the rare disease community, EURORDIS strengthens the patient voice and shapes research, policies and patient services.
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There are already 215 members in the group and most of them are actively involved in discussions, trying to gain knowledge, answering questions or sharing their experiences.
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