Menu
Close
Menu
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 invite you to join the Xmas concert by Camerate Carnuntum at Café Im Wittnerhof (Lower Austria). All benefits from the event will be donated to the association. Please note […]
We are proud to be one of the 11 new associations and patients advocacy groups in the field of rare diseases from Germany and Austria that will join the RARE […]
Subscribe to out newsletter to stay informed about our actions and scientific advances on the syndrome
