CUTIS LAXA INTERNATIONALE

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PRESS RELEASE

The very life of our association is linked to Media.  Without Cecile appearing on the screens during Telethon 2000, each one of us would still remain alone,  Cutis Laxa Internationale would not exist.

WHY USING MEDIA ?

Since “Reports” has been broadcasted on the French Channel TF1, on Saturday 18^th October 2003, the visits on our website have “exploded” and our email box has been “overloaded”.

In this report Cecile explained what Cutis Laxa has brought in her day to day life, especially the others’gaze.

Here is the “outcome” of what this broadcast brought us. It proves that communicating is an essential work if we want to help Rare Disorders to come out of the shadow :

• 3 new French sufferers have joined us ;
• More than 100 messages of support, sympathy and congratulations for the quality of report have been sent to us, by post or email. Cecile even received flowers twice;
• Many people have talked to us, in the street, in shops, even in motorway gas stations……recognizing Cecile (and even me or Jean-Louis), just to say hello, good luck, go on fighting the disease….
• New members and volunteers  have joined our Support Group
• 10 students (colleges, high schools and universities) have asked for information and documents in order to present Cutis Laxa in their classes or for studies….
• We received many donations, small and big. A Club of a small French town even sent us 750 Euros (more or less 750 $ US) to help research…..
• Many French TV  newspapers talked about us
• Over 1,600 persons went to visit our website within 10 days  ( more than in one whole year. We normally  have an average of 100 visitors per month !!!!)

And we don’t forget Megane who received more than 3000 messages. Megane suffers from Progeria. The second part of the report was about Megane. Cecile and Megane know each other very well .  This is how we will “change the gazes”…….

Since December 2000, many articles, broadcasts, reports, helped us get Cutis Laxa better known. Each time, it has been the occasion for new sufferers to join us. You will find  all the articles, as well as the mention of all the broadcasts we took part in, classified according to year. There may be others we didn’t know of. Many  articles are in French. It was impossible for us to translate them all, so we just indicate the title and subject in brackets. Please accept our apology. You can have a look at some of them by clicking on the links. Go and see what happened in 2013, 2012, 2011, 2010, 2009

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Version 2.06 - Last update : 20th January 2013