Our Aims and Projects
We are a voluntary, non-profit, Association. We are under French Law of 1901.
Our statutes have been registered by La Prefecture de La Rochelle(France) under the number 0173004943.
The following are incorporated in our statutes :
- To break the isolation of sufferers and their families in France and abroad.
- To bring together all the people likely to support our actions.
- To look for as many sufferers from Cutis Laxa as possible throughout the world to create the necessary mass for research.
- To assemble as much of the available data on Cutis Laxa.
- To inform the media and the medical world about Cutis Laxa.
- To get Cutis Laxa recognised as an orphan condition.
- To work towards financing and supporting research.
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.