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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.
We are proud to be one of 44 rare disease patient organisations and advocacy groups in Germany and Austria to once again unite [...].
On Saturday 20 December, from 5pm, we'll be running a coffee/cake stall in the Gramatneusiedl community centre. As part of this much-loved tradition, based on the theme [...]
On 15 and 16 November, we'll once again be staging our punch stand in Gramatneusiedl. With delicious mulled wine and culinary specialities, we will once again be [...]
Once again this year, MECP2 duplication UK will be hosting the MDS Family Day in Manchester on Saturday 8 November 2025. The meeting will be held at the DoubleTree Hilton Hotel [...].
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