But also, and especially :
- To enable sufferers who have identical or similar associated symptoms to exchange their experiences.
- To guarantee to each and every family full confidentiality for the data they give us. We will only pass on information to other families or medical staff if the families have given us their signed consent.
TO REACH THESE AIMS ,
Each year we draw up Projects we hope to achieve along the year. It is not always easy…….. we constantly must adapt our ideas to our financial capacities……and they are small.