Youtube with “Tibo InShape”

New video

Cécile was interviewed by #Tibo InShape on his youtube page.

A very serious, but joyful, moment that also allowed us to open an online funding page


Good-Bye ERIC

I am so very sad to announce that Eric MOLINIE left this world on 21st December 2022.

Eric was former chair of AFM-Téléthon in France. He was himself diagnosed with Duchenne Myopathy.

He is the one who made it possible for Cutis Laxa to be known and research be done.

We had explained to Eric that without enough known patients research would never be done on such a rare disorder. He had promised that if we knew at least 10 patients, AFM-Généthon would start a research.

In december 2001, Cécile took part in the French Téléthon for the second time. At that time, we knew of 9 patients in France and abroad. Cutis Laxa International was just 1 month old, being set up on 11th November 2001.

We were on stage, live, explaining that 10 patients were needed, at least, to start a research, when Eric quickly rolled his wheelchair to join us, saying that a 10th patient had called the AFM and that, keeping his promise, Genethon will start a research project.

And on February 2002, it started.

We were all crying on stage. And still today, 20 years later, this memory brings me tears and shivers.

Thank you Eric, Without you the 520 patients we know of today would not have research going on giving them hope for the future.

Thank you Eric, for staying faithfully at our side during all these years.

Rest In Peace dear Friend


Read this article

Rare and I live with it

Cécile was interviewed by for their new podcast

“Rare and I live with it”.

You can listen to it (in French):

on google

Or read the abstract:

here : – Podcast « Rare Disorder and I live with it » episode 9 : Cécile’s testimony

Read this article (in French)


Listen to the Podcast (in French)

Canal JDP

On 3rd December 2022, during the Dermatology Days of Paris (JDP),

organised by the French Society of Dermatology,

Marie-Claude Boiteux interviewed Pr Ludovic Martin for “Canal JDP”:


Weekly newspaper « Télé7jours » : Sophie Davant remembers the 10th Cutis Laxa patient discovered during Telethon 2001.

read this article (in French) : Sophie Davant, French journalist, tells how the Telethon 2001 supported the first research on CL

Read this article (in French)


In the Media

1st March 2022 :

Le Monde – Tribune Grand Angle :

What about recognition for rare disorders representatives ?

Read the article (in French)


April 2022 :

Le Trombinoscope :

Calling for recognition of rare disorders representatives

Read the article (in French)