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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.
This important event will allow MDS specialists, scientists, and families to meet and discuss current developments in patient care and treatment. All family members, affected children, siblings and caregivers are […]
For organizational reasons, this event is postponed to a later time point - We thank you for your understanding! On the 22nd of June 2024, we will be hosting a […]
