Survey on sensory abilities
Help researchers learn more about the sensory abilities of people with MECP2 gene duplication syndrome, which have been little studied until now.
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Help researchers learn more about the sensory abilities of people with MECP2 gene duplication syndrome, which have been little studied until now.
This major event will provide an opportunity for doctors, scientists and families to meet and discuss current developments in the search for treatment and patient care. New therapeutic approaches will also be presented. To register: 2022 MECP2 Duplication Family Conference Registration (office.com)
Come and join us at the Esquibien swimming pool to support research into the syndrome! All proceeds from the event will go to the Les petits Mec P2 association. On the programme: freestyle swimming, slides, games on inflatable structures, introduction to freediving... and much more! And all in a musical atmosphere! For more information, call [...]
Cure MDS is organising "Giving Tuesday" on 29 November 2022. We can't cure duplication of the MECP2 gene without you! Contribute to the event by sharing the information and taking part in Giving Tuesday! To support and donate: Donate to the Rett Syndrome Research Trust to Advance Rett Treatments (reverserett.org)
Take part in the Cure MDS survey to help researchers understand the needs of families affected by duplication of the MECP2 gene. The information gathered will be used to identify needs in terms of resources, support and care centres. Care Center Information (google.com)
The meeting will take place online on 27 January 2023 at 8.30pm and will be held in German. Participation is open to all. The following topics will be discussed: MECP2 duplication syndrome and the state of research Our members Our missions and actions Job vacancies and how to become a member To take part in the [...]
Huda Zoghbi is Professor of Paediatrics, Molecular and Human Genetics, Neuroscience and Neurology at Baylor College of Medicine in Houston (USA). She has made major scientific advances in MECP2 gene duplication syndrome and Rett syndrome, and has received a number of prestigious awards for her research. Her work [...]
Huda Zoghbi is a professor of paediatrics, molecular and human genetics, neuroscience, and neurology at Baylor College of Medicine in Houston (US). She has made groundbreaking discoveries on MECP2 duplication syndrome and Rett syndrome and has received numerous prestigious awards for her research. The work of Prof. Zoghbi gives hope that one day a cure [...]
"DupMECP2.eu - Lasst uns MDS heilen", in collaboration with other international organisations, is working with Ionis Pharmaceuticals on a series of webinars designed to highlight key topics in drug development. Together, we want to ensure that the patient community has the education, support and resources it needs to understand [...].
July is fast approaching, and we are delighted to announce the next MECP2 gene duplication syndrome awareness month. Throughout the month, a range of international organisations will be joining forces to shine a spotlight on the syndrome, raise awareness of the challenges faced by people with disabilities and promote [...].
See you at the MECP2 duplication family reunion in Manchester! MECP2 duplication UK will be hosting the MECP2 duplication syndrome family day at the Holiday Inn in Oldham, Manchester on Saturday 28 October 2023. Dr Davut Pehlivan from Texas Children's Hospital will be joining the meeting and will provide an update on the [...]
The Live & Pur group, which has already given a number of benefit concerts for social causes, is happy to do its bit for a good cause, and will be giving a concert for the Lasst uns MDS heilen association on 25 November 2023 in Gramatneusidl (Austria). All the members of the association would like to express their heartfelt thanks to the music group, [...]
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