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News
All articles about our actions and international updates
Giveaway: Win a 2-Night Stay in Dubai!
Take the chance to win 2-night stay in Dubai for two people! Not
ION440: IONIS brings MDS community to the next level
Written by David and verified by Ionis Following Ionis’ recent announcement about the
Insight into the NHS: How does Charlie contribute to research?
Charlie is one the children participating in the natural history study (NHS) conducted
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
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
Ben’s journey at Kokon
Written by Jeannine, Ben’s mom This year, Ben’s rehabilitation took place in May
Our newsletters
All newsletters published
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
Newsletter December 2023
Here is the second issue of our newsletter. In this issue, you will
Events
All national and international events concerning the syndrome
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 […]
We invite you to join the Xmas concert by Camerate Carnuntum at Café Im Wittnerhof (Lower Austria). All benefits from the event will be donated to the association. Please note […]
Once again this year, the Gramatneusiedl "Kinderfreunde" invite you to come and listen at the Gramatneusiedl library. The 1st reading starts at 16:00h with Marina Graf. From 16:30h I can […]