Each year on the 25th of June we celebrate Global MSS Awareness Day.
On this day we honor:
Every person who has shared, donated or supported our cause: Thank you all for helping us raise awareness for this ultra-rare condition!
The MSS Family Weekend 2025 was once again a great success! No fewer than ten families gathered at the beautiful location ‘De Kindervallei’ in Valkenburg from Friday June 20th till Mondaymorning 23rd to meet and inspire each other.
The enthusiastic families received a warm welcome (both literally because of the tropical temperatures that weekend and figuratively) and enjoyed three days of meetings, gatherings, relaxation, delicious food, and fun activities. Researchers were also present to hold personal consultations with the families. This was extremely valuable!
All this was made possible by a large group of volunteers to whom we are very grateful. They organized fun activities for the siblings, provided meals and gave the parents a break when they wanted to relax. To strengthen the connection between the families and researchers, interpreters were present for the families who needed them. This was our 8th MSS Family Weekend.
We are looking forward to organize our next MSS Family Weekend in 2027.
Voor het beantwoorden van vragen en het bespreken van diverse thema's rondom MSS gebruiken we de kracht van Waihonapedia. Dit is een digitaal platform dat wereldwijd gebruikt wordt voor meerdere zeldzame aandoeningen. Het is een platform waarop kennis en ervaring kan worden gedeeld en waar vragen en antwoorden worden gepubliceerd. De stichting MSS is lid van dit platform.
De komende maanden zullen we steeds meer informatie, thema's en veelgestelde vragen en antwoorden publiceren op Waihonapedia. In 2024 zal er 1x per twee maanden een update worden geplaatst met weer nieuwe toegevoegde informatie, vragen en antwoorden. Vanwege het internationale karakter van onze doelgroep hebben we ervoor gekozen om alles op Waihonapedia in de Engelse taal te publiceren.
Ga naar de MSS-informatie op Waihonapedia voor een overzicht van vragen en antwoorden: Ga naar Waihonapedia
To answer questions, we use the power of Waihonapedia: a platform for different worldwide rare diseases and a place to to share experiences and publish questions and answers. Our MSS Foundation is a member of this platform.
We are working hard to improve this Q&A. There will be an update every two months.
Go to the MSS space in Waihonapedia for an overview of questions and answers: Go to Waihonapedia
Rare, but not unknown anymore
Our slogan: “Rare, but strong together!” is part of our mission. Marshall-Smith Syndrome is an ultra-rare disease, we only know of 65 children worldwide with this syndrome. And what about "strong together": parents, doctors, carers and volunteers worldwide are doing all they can to contribute to a better life for children with MSS and their families. Have a look at our mini documentary to get some closer to families with MSS.
Rare, but strong TOGETHER!
