Auf Antrag der Patientenvertretung wird der Gemeinsame Bundesausschuss (G-BA) über die Aufnahme der Metachromatischen Leukodystrophie (MLD) in das bestehende Neugeborenen-Screening beraten.
Mit dem Antrag vom 16.01.2025 strebt die Patientenvertretung an, das bestehende Screeningprogramm in Deutschland um die genannte Zielerkrankung zu erweitern. MLD ist eine seltene genetische Stoffwechselerkrankung, die eine Zerstörung des Nervengewebes auslöst. Bei den betroffenen Kindern kann dies zu schwersten Behinderungen oder zum Tod führen, wenn keine Therapie erfolgt.
Die vollständige Pressemitteilung der Patientenvertretung im G-BA finden Sie im Downloadbereich.
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Alles zum Thema: Patientenvertretung, Pflegemitwirkung
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