Overview of all the frequently asked questions
We collect questions often asked by people around a rare condition, 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 a rare condition, 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 a rare condition, are committed to doing with heart and soul.
