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, [...]
The band Live & Pur, who has already given several benefit concerts for social causes and likes to put itself at the service of good causes, will give a concert for the association Lasst uns MDS heilen on November 25, 2023 in Gramatneusidl (Austria). All members of the association thank the music band from the [...]
The Ober St. Veit Neighbourhood Festival is a popular family festival organised by the Ober St. Veit merchants. This year, it will take place on 24 and 25 May 2024 in Ober St. Veit (Vienna, 1130, Austria). The event features an entertaining programme and a superb tombola, with part of the proceeds going to the DupMECP2 charity. [...]
The Grätzlfest in Ober St. Veit is a popular family festival organised by the Kaufleute Ober St. Veit. This year, it will take place on 24 and 25 May in Ober St. Veit (Vienna, Austria). The event features an entertaining programme and a big tombola, with part of the proceeds going to the DupMECP2 Lasst uns MDS association.
For organisational reasons, this event has been postponed indefinitely. Thank you for your understanding! On 22 June 2024, we will be organising a relay marathon in Gramatneusiedl (Austria)! The relay race will cover 42 kilometres and will offer two special challenges: a sporting challenge and a charity challenge. Each runner can choose [...]
This important event will allow MECP2 gene duplication syndrome specialists, scientists and families to meet and discuss current developments in patient care and treatment. All family members, affected children, siblings and carers are welcome. [...]
Afternoon reading in the library on 29.11.2024 Once again this year, the children's friends of Gramatneusiedl invite you to listen to stories in the Gramatneusiedl library. The first reading will start at 16:00 with Marina Graf. From 16:30 onwards, Thomas Keim will take over to read and play the handpan for a while.this year, the [...]
We invite you to attend the Camerata Carnuntum Christmas concert at Café Im Wittnerhof (Lower Austria). All proceeds from the event will be donated to the charity. Please note that tickets must be booked by telephone on 0043 6507632552/ 0043 6507632546. We would like to thank the organisers of this event for this wonderful initiative, and hope to see you there too.
We are proud to be one of 11 new rare disease patient organisations and advocacy groups in Germany and Austria to join the RARE DISEASES RUN in 2025! The RARE DISEASES RUN is Europe's largest virtual running race for rare diseases, with over [...]
On 25 May, a one-day bike ride will take place in Gramatneusiedl (Lower Austria, near Vienna) between 9am and 12pm. As part of this event, we can take care of the refreshment station. Whether you're coming by bike, on foot or by car, we'd be delighted to welcome you at the refreshment station. All [...]
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