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 [...]
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 directly at Manchester Airport. Dr. Davut Pehlivan from Texas Children's Hospital and the Ionis team will join the meeting and give a presentation on the [...].
On 15 and 16 November, we will once again be holding our punch stand in Gramatneusiedl. With delicious mulled wine and culinary specialities, we'll once again be kicking off this quiet, contemplative period, while raising awareness of the MECP2 gene duplication syndrome. More details will follow soon on our social networks.
On Saturday 20 December, from 5 p.m., we will be hosting a coffee/cake stand in the Gramatneusiedl community centre. As part of this much-loved tradition, under the theme "Advent together", more than 20 different associations will be offering exceptional specialities. There will also be a varied programme for young and old. We are looking forward to [...]
We are proud to be one of 44 rare disease associations and patient advocacy groups in Germany and Austria to join forces again for the RARE DISEASES RUN 2026! The RARE DISEASES RUN is Europe's largest virtual running race for rare diseases.
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