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Nationale und internationale Patientenorganisationen und Netzwerke Deutsche Selbsthilfe Angeborene Immundefekte - DSAI e.V. Allianz Chronischer Seltener Erkrankungen - Achse e.V. European Organisation for Rare Diseases International Patient Organisation for Patients with Primary Immunodeficiencies (IPOPI) European Society for Immunodeficiencies – ESID Europäische Datenbank Seltener
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EU-Ebene EU Kommission, GD Gesundheit und Verbraucherschutz Öffentliche Gesundheit : Forschung: Links to EU projects aimed at developing innovative and effective therapy for rare lung diseases Orphan Drugs: Orphan Medicinal Products: Legislative provisions and advances concerning orphan drugs in the EU Scientific Opinions: European Medicines Agency opinions and evaluations concerning orphan drugs
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