Stories are written for and by people around a rare condition, so we know what we are talking about. We listen to all the stories, write them down and share them. And translate relevant news about a rare condition into readable articles. In this way we want to connect families, let them laugh and relax or give them just that little bit of support. Because if there is something important for families with a care-intensive person like a rare condition, it is that the family remain upright. And that is what we, as community around a rare condition, are committed to doing with heart and soul.
