Stories by you, involved by una enfermedad rara, 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 una enfermedad rara. 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-intensivecare-intensive: a lot of care is needed. A care-intensive child is a child with a physical, mental or behavioural disability (or a combination thereof) that requires extra care.
care-intensive: a word that we came up with, with which we focus on the experience of the care with una enfermedad rara rather than the diagnostics. child like una enfermedad rara, it is that the family remain upright. And that is what we, as community around una enfermedad rara, are committed to help and listen to you with heart and soul.
