Information
Our information is written for and by people around Marshall-Smith syndrome, so we know what we are talking about. We search for information, rewrite them to be understandable and share them. And share relevant news about Marshall-Smith syndrome by readable articles. In this way we want to inform families, make the feel empowered to educate the cure- and care-people or give them just that little bit of support.
Because if there is something important for families with a care-intensive person like Marshall-Smith syndrome, it is that the family remain upright. And that is what we, as community around Marshall-Smith syndrome, are committed to doing with heart and soul.
The Marshall-Smith syndrome (MSS) is a very infrequently described syndrome. The syndrome has been described for the first time in 1971. Since then, about 50 children and adults with the syndrome are known in the medical literature worldwide.
- approfondire la tua conoscenza
- What is the Marshall-Smith Syndrome?
- What are the symptoms?
- What can you expect?
- What causes the Syndrome?
- How is your child diagnosed?
- Which tests and treatments are available
- How does it affect daily life?
- What does it mean for you as a carer?
- As parents/carers, what can you do yourself?
- How is care organized?
