Rare and I live with it

Cécile was interviewed by Handicap.fr for their new podcast

“Rare and I live with it”.

You can listen to it (in French):

on google

Or read the abstract:

here :

Handicap.fr – 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”:


French Health Minister’s message

30th November

The 3rd Conference of the French Federation for Skin was opened by Mr Olivier Véran, French Minister of Health and Solidarity. Convinced that democracy is necessary in health issues, he recognised the quality of the FFP advocacy and the real obstacle course its 21 member organisations can face.

Watch his message here (in French) : https://www.youtube.com/watch?v=Bvm0lmixr7E


In the Media

They talk about Cutis Laxa :

On 16th March, Chiara’s testimony (in French and in Italian) was posted on Facebook : https://www.facebook.com/photo?fbid=3509557279156318&set=pcb.3509561645822548


On 7th April, « Le Tribunal du net » edited an interview with Cécile (in French).  Watch it again on our website https://www.cutislaxa.org/fr/quoi-de-neuf/ (videos) or on the “Tribunal du Net” page “https://www.facebook.com/letribunaldunet/videos/1782251148618795


In April and May, every week, Ewenlife published one of the 8 videos about Cutis Laxa. From diagnosis to medico-social care and treatments, all issues are tackled. You can watch them again (in French or with subtitles in your own language) on our website https://www.cutislaxa.org/fr/quoi-de-neuf/ (videos) or on Youtube :  https://www.youtube.com/watch?v=XPI5X03FOEw&list=PLvUNl3idDQjTKEL_-tfQjZUE9ixRnH_aD

Cutis Laxa Videos ……… N°8 ……. last one

Here is the 8th …..and last…..of our videos

“Advice and support : “we are here !”” …  this is my conclusion

and also how we, parents, can help our “different” children.

I hope you enjoyed those videos.

you can find the 8 videos on the playlist :


and don’t forget you can have subtittles in your own language

Cutis Laxa Videos …… N°7

Treatments and surgeries are the topics of our 7th video about Cutis Laxa



And don’t forget you can get subtittles in your own language.

Cutis Laxa Videos …. N°6

Let’s watch the 6th episode of our videos about Cutis Laxa.

Today :  the difficulties with the administration (in France but maybe same issues in other countries) and how CL patients must sometimes struggle to get their rights respected.

 and don’t forget you can get subtittles in your own language:


Cutis Laxa Videos …… N°5

Today’s topic is our organisation “Cutis Laxa Internationale” celebrating its 20th anniversary on 11th November 2021


and how many CL patients are there worldwide as of today (April 2021)

Remember you can get subtittles in your own language

Cutis Laxa Videos …… N°4

Today I talk about the impact of the disorder in adulthood: love life, finding a job, etc.


and you can get subtittles in your own language :