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We collect questions often asked by people around Rubinstein-Taybi syndrome, so you can search if your question is already asked. Each new question that is asked within our community is answered by a forum of experts with different expertises. We add links to helpful information, rewrite them to be understandable and share them. In this way we want to inform families, make them feel empowered and give them just that little bit of extra support.
Because if there is something typical for families with a care-intensive person like Rubinstein-Taybi syndrome, is that you will have a lot of questions. And we all want that you can remain upright, by showing that no question is too complicated or not worth asking. And that is what we, as community around Rubinstein-Taybi syndrome, are committed to doing with heart and soul.
Rubinstein-Taybi syndrome is a condition characterized by short stature, moderate to severe learning difficulties, distinctive facial features, and broad thumbs and first toes. It occurs in an estimated 1 in 125,000-300,000 births.