MSS in the press
The Dutch children with Marshall Smith Syndrome (Nina, Adriana and Joas) in the media.
In Dutch Newspapers, on Television and Radio there was a lot of attention for the Marshall-Smith syndrome.
ANBI
The MSS (Marshall-Smith Syndrome) Research Foundation has a so-called Tax Charity status in The Netherlands (ANBI). This allows donations te be deducted in the income tax return.
MSS Research Foundation
RSIN / Tax number: 818846306
Adress:
Oeverbiesstraat 20
NL 2548 WP
The Hague The Netherlands
+31(0)70-3356956
Donations: RABOBANK - NL83 RABO 0140 3511 59
The foundation's goal: to finance and stimulate scientific research into the Marshall-Smith Syndrome (MSS) and providing information about this syndrome to a wide audience.
Promotion material
For you support event or support action for the MSS Research Foundation you can use the following material.
Please download or contact us for folders. Send an E-mail to info@marshallsmith.org.
Policy
The MSS Research Foundation was founded 15 December 2007. We have accomplished a lot and we are very ambitious for the future.
HISTORY OF RESEARCH INTO MSS FROM AMSTERDAM UMC - UNIVERSITY OF OXFORD
Research into MSS is conducted in Oxford from a collaboration between Amsterdam UMC and University of Oxford. Having discovered in 2010 that an abnormality in the NFIX gene is the causative agent of Marshall-Smith Syndrome, this collaboration started in 2015.
We created a poster showing the timeline of the study and summarising in simple terms the results so far.
1 Kooblal, K.G., et al. (2023). A Mouse Model with a Frameshift Mutation in the Nuclear Factor I/X (NFIX) Gene Has Phenotypic Features of Marshall‐Smith Syndrome. JBMR Plus, 7(6): e10739. Link to article
MSS Newsletters
The MSS newsletters contain a lot of useful and practical information about (research on) Marshall-Smith syndrome.…
Rare, but not unknown anymore
Rare, but not unknown anymore
Our slogan: “Rare, but strong together!” is part of our mission. Marshall-Smith Syndrome…
Family Event 2022
From 17 to 20 June 2022 the 7th MSS Family Event was held in 'De Kindervallei' in Valkenburg. And what a wonderful…
A Perfect Day for MSS
On Sunday, 24th of June 2018 we had our second “Maya`s Benefiz day” . It was some kind of a street party in the lovely…
The story of Joas
Joas lives in The Hague, The Netherlands. Immediately after his birth in July 2006, he developed breathing problems and was brought to a hospital..