Archives
News
All articles about our actions and international updates
Survey mapping potential participation in MECP2 Duplication Syndrome trials
Research on MECP2 duplication syndrome has taken an unprecedented step: entering the world
Start of recruitment for the ATTUNE clinical trial
The ATTUNE trial is a Phase 1/2 clinical study sponsored by Ionis. It
Recruitment starts for HERO: CRISPR cas13-clinical trial for MDS
The HERO clinical trial is a pioneering study evaluating HG204, a novel CRISPR
Medias
All television programs talking about the diagnosis, management and life of children with MECP2 duplication syndrome
All press articles talking about the diagnosis, management and life of children with MECP2 duplication syndrome
Insight into life with MECP2 duplication syndrome
“Die ganze Woche”, an austrian newspaper, visited the Curic family. Jan’s mom bravely
DupMECP2 featured in “Servus nachbar”
Servus Nachbar featured the association as part of the bike tour organized by
DupMECP2 – Lasst uns MDS heilen appears in an Austrian newspaper
Within the bike tour was organized by the city of Gramatneusiedl, our association
Publications
All articles about scientific breakthrough on MECP2 duplication syndrome
Assessing the Burden on Caregivers of MECP2 Duplication Syndrome
MECP2 duplication syndrome (MDS) is a progressive neurogenetic disorder with both intellectual and
Reversible phenotype in humanized mouse model
Shao et al. from Prof. Zoghbi’s group (Baylor College of Medicine, Texas, USA)
Reversal of phenotypes in MECP2 duplication mice
Prof. Huda Zoghbi et al (Baylor College of Medicine, Texas, USA) published an
Testimonials
All articles about sharing experiences between families to enhance the life of children
Plomet: A story of hope, support, and advocacy for MECP2 Duplication Syndrome
Written by Julian (Aleix’ Dad) Our son Aleix, 9 years old, was diagnosed
Jan’s journey at Adeli
Written by Ana, Jan’s mom Dear readers,Today I would like to tell you
Luzia’s journey at Kokon
Written by Micki, Luzia’s mom Luzia is an extraordinary child. She has an
Our newsletters
All newsletters published
Newsletter February 2025
Here is the fifth issue of our newsletter. In this issue, you will
Newsletter August 2024
Here is the fourth issue of our newsletter. In this issue, you will
Newsletter April 2024
Here is the third issue of our newsletter. In this issue, you will
Events
All national and international events concerning the syndrome
Save the Date for the MECP2 Duplication Family meeting in Manchester! The association “MECP2 duplication UK” will host the MDS family conference day at the Holiday Inn in Manchester on […]
A cycling day will take place on the 25th of May in Gramatneusiedl (Lower Austria, near Vienna) between 9 a.m. and 12 p.m. As part of this event, we will […]
We are proud to be one of the 11 new associations and patients advocacy groups in the field of rare diseases from Germany and Austria that will join the RARE […]
Summary of past Events
All summary of our past events
Punch stand for children with MDS – a great success!
The main square in Gramatneusiedl was transformed into a meeting place of conviviality
A special concert for our special children
The last highlight of 2024 for our association took place on the 22nd
Summary of the family conference in Houston
DupMECP2 participated in the MECP2 Duplication Family Conference on the 25th and 26th