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Our association is aiming to support children and families affected by MECP2 duplication syndrome, a rare, severe and progressive genetic disease.
Our missions are dedicated to: support families, inform about scientific advances, fund research projects.
Our association is aiming to support children and families affected by MECP2 duplication syndrome, a rare, severe and progressive genetic disease.
Our missions are dedicated to: support families, inform about scientific advances, fund research projects.
MECP2 gene duplication syndrome is a rare and severe genetic disorder. The syndrome is mainly characterized by intellectual disability, hypotonia, lack of speech and seizures. The symptoms and their intensity vary from child to child.
Our association is aiming to raise awareness on rare diseases, identify projects and participate in their funding and support and inform families to enhance quality of live for children with MECP2 duplication syndrome.
Contribute to projects to advance research, support families, improve care, or help the development of our association.
Clinical research needs all patients with MECP2 duplication syndrome in order to gather as much information as possible about this rare disease. There are several registries where people with MECP2 duplication syndrome can be registered to increase knowledge about MECP2 and to advance drug research.
Nous sommes fiers de faire partie des 48 associations et groupes de défense des patients dans le domaine des maladies rares en Allemagne et en Autriche, qui unissent à nouveau […]
Le samedi 19 décembre 2026, à partir de 17h00, nous tiendrons un stand café/gâteaux au centre communal de Gramatneusiedl. Dans le cadre de cette tradition très appréciée, placée sous le […]
Les 14 et 15 novembre 2026, nous organiserons à nouveau notre stand de punch à Gramatneusiedl. Avec du bon vin chaud délicieux et de petites spécialités culinaires, nous vous invitons […]
This important event will enable MECP2 gene duplication syndrome specialists, scientists and families to meet and discuss current developments in the field of gene therapy.
Subscribe to out newsletter to stay informed about our actions and scientific advances on the syndrome
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