Archives
News
All articles on new information about the syndrome
REMEDS: The international registry for patients with the syndrome
The time has come! We invite all MDS families to
Survey results: The global MECP2 Duplication community speaks
Research into MECP2 duplication syndrome has reached an unprecedented stage
A new step forward in the search for a cure: UMass Chan licenses siRNA technology
UMass Chan medical school licenses promising technology
Media
All the television programmes about the diagnosis, care and life of children with the MECP2 gene duplication
All the press articles about the diagnosis, care and life of children carrying the MECP2 gene duplication
Overview of life with MECP2 gene duplication syndrome
"Die ganze Woche" visited the Curic family. Visit
DupMECP2 in the "Servus nachbar" journal
Servus Nachbar" newspaper presents the association as part of the bike tour
DupMECP2 - Lasst uns MDS heilen appears in an Austrian newspaper
As part of the bike ride organised by the town of
Publications
All articles on major scientific advances in MECP2 gene duplication syndrome
Assessing the burden of MECP2 duplication syndrome on carers
MECP2 gene duplication syndrome is a progressive neurogenetic disorder which
Reversible symptoms in humanised mice
Shao et al. from Prof. Zoghbi's group (Baylor College of Medicine, Texas,
Reversible symptoms in mice
Prof. Huda Zoghbi et al (Baylor College of Medicine, Texas, USA) have published
Testimonials
Donations in memory of loved ones
Recently, a number of families, still reeling from the shock of the loss
Holidays with a child with disabilities: why they matter more than you think
For many families, going on holiday is synonymous with relaxation, spontaneity and days out.
Our Heroine: Dr. Gudrun Gröppel
Dr Gudrun Gröppel is a neurophysicist and researcher at the J. Kepler University Hospital.
Newsletters
All newsletters
Newsletter September 2025
This is the sixth issue of our newsletter. In this issue, you will find: P.S.
Newsletter February 2025
This is the fifth issue of our newsletter. In this issue, you will find: P.S.
Newsletter August 2024
This is the fourth issue of our newsletter. In this issue, you will find: P.S.
Upcoming events
Don't miss out on national and international events concerning the syndrome
We are proud to be one of 33 rare disease patient organisations and advocacy groups in Germany and Austria to once again unite [...].
On Saturday 20 December, from 5pm, we'll be running a coffee/cake stall in the Gramatneusiedl community centre. As part of this much-loved tradition, based on the theme [...]
On 15 and 16 November, we'll once again be staging our punch stand in Gramatneusiedl. With delicious mulled wine and culinary specialities, we will once again be [...]
Past events
Summaries of past events
Cycling Day on 25 May 2025
On Sunday 25 May, for the third time, our association had the pleasure of
Coming Together for MDS at the Ober St. Veit Street Festival
On 9 and 10 May 2025, we had the pleasure of participating in the
Rare disease run 2025
We are delighted to be able to share in the incredible success of the Rare Disease Run
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