CUTIS LAXA INTERNATIONALE

 

    We are starting a great story..............................All together.

 

 

 

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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 : to break 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.

If you want to join us, if you want to help us, please print and complete the form below, and send it back to the address mentioned below with your membership fee and/or your donation.

 

CUTIS LAXA INTERNATIONALE  ASSOCIATION

138 impasse de Champs Gervais - 74890 Bons en Chablais  -  France

NAME……………………....................................…………  FIRST NAME…………………...................................…………………….

ADDRESS………………………....................................................................………………………………………………………………

ZIP CODE……………………………….TOWN…………....................................................................……………………………………

COUNTRY……………................…………………Email……………......................................................………………………………….

     Wants to support Cutis Laxa Internationale by sending his/her  membership fee : 30 € (when paid in Euros) ; due to the very high cost of foreign currency exchange for small sums, if you cannot pay in Euros we require the equivalent of 50 € in your own currency.

     Wants to send a donation. Amount…………………..

As indicated in French law “Freedom and  Computers” 06 July 1978, you have the right to have access and to rectify your personal  mentions. If you want it, write to our Association.

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For any question about this site or our association, send a mail to MCJLBoiteux@aol.com
Version 2.06 - Last update : 20th August 2016