Our Association was established on November 11th 2001. We are a small group of families from around the world and concerned by this rare genetic disease. Our objectives are primarily : tobreak the patients’ isolation ; to increase the medical world’s awareness of this little known disease. In this day and age, it is unacceptable for doctors not to take charge of some patients out of ignorance of this syndrome. This is how some people are not or very lately diagnosed.
To-day, because of Cecile who has taken part in a number of TV broadcasts in France, and because of our website on internet, we have been able to meet each other, to gather together, to share our tears and laughs, to break our loneliness, and most importantly, to help a research project start in France. A lot of work has already been done but there is even more awaiting us.
We need you.
We can assure you that we will share any and all information we gather concerning Cutis Laxa.