Stories by you, involved by a rare condition, are very important to us. We listen to all the stories. We might learn from you and/or understand the struggles you are going through. Your story might be relevant to others that are also involved with a rare condition. 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 child 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 help and listen to you with heart and soul.
