MAPPING RARE

28th February 

On the occasion of Rare Disease Day 2026, Rare Disease International opened the

« Mapping Rare » page on its website

(www.rarediseaseinternational.org/mapping rare/)

Cutis Laxa International  is in the spotlight.

When you click on the spot, you access to lots of information

Ahead of the official opening, Marie-Claude Boiteux, presented it during a webinar

 

Poem for a woman diagnosed with Cutis Laxa

She had been told that it would be difficult

She had been told that her body would be a limit, that her rare disease would draw the contours of her life before she even had time to dream. The doctors spoke of caution. Some spoke of the impossible.

But she spoke of hope.

Her adolescence was not kind. The gazes, the judgments, the criticisms… She was sometimes reduced to diagnosis, as if she was just a medical label. We doubted her, her strength, her future.

Yet, behind the silences and tears, there was quiet determination. A desire to prove – not to others, but to herself – that her life is not dictated by fear.

The disease is there, yes. Real. Demanding. Sometimes unfair.

But she chose to fight. To heal herself, to listen to her body, to fall and get back up. She turned every doubt into a driving force. Each critic in energy. Every obstacle in learning.

She didn’t grow up despite the disease. She grew up with it.

Today she is married. She has children. She lives what she was told is uncertain, even unattainable. Not because everything was easy – but because she never stopped believing. It proved that a diagnosis is not a destiny, that a difficult adolescence does not define an entire life.

Her story is not one of a miracle.

It is that of a fight.

Of silent perseverance.

Of hope that was kept alive every day, even when everything seemed bleak.

And above all, it is proof that one can overcome predictions, judgments and despair…. When you decide not to give up.

Many Thanks to the anonymous writter of these words

25 Years ago……

A flagship show of the 1990s and 2000s, “Ça se discute” (“It’s debatible”) made its comeback sixteen years after the end of its broadcast on France 2. On RMC Life, channel 25 of the TNT, Estelle Denis succeeds Jean-Luc Delarue for shows that are as moving and captivating as ever.

On February 03, 2026, at the end of the show dedicated to eating disorders, Cécile Boiteux-Gueye was invited to talk about her journey since her participation in the show on September 12, 2001, when she was only 11 years old.

This very first program in which Cécile participated was the beginning of the great story of Cutis Laxa International because it is thanks to this program that other patients contacted us, that other programs took place with Cécile and that the patients, isolated, were able to get in touch with us.

There were 9 of us at the time, today there are more than 580.

Thank you “Ca se discute”

And in the Media…..

8th October :

Doctissimo press release :

« Skin Diseases – A public health issue that is still underestimated, a collective to make things happen »

read the article (in French)

 

8th December :

Le Monde :

« The rise of cosmetic surgery accentuates the lack of dermatologists»

read the article (in French)

Triathlon de Sireuil

On 21st November 2025,

the town of Sireuil handed a €2,000 cheque thanks to the profits made by

the Triathlon and the Brin d’Aillet run

and the newspaper “Charente Libre” reported on that event

In the Media

11th March :

Local radio “Jordanne FM” interview with Philippe Barrière, Chair of La Pastourelle, announcing the Salers Night Fever

Read to the interview (in French)

30th March:

Facebook Page «Dermato Info»: presenting CLI

03rd May:

Charente Libre: Walking for CLI on 1st of May

30 Mai :

WHA Resolutions are voted

Read the press release (in English)

May 2025:

La Pastourelle: Brochure and Facebook page announcing the « Night Fever in Salers » to the benefit of CLI

July 2025:

Taking stock of the « Heroes Run » : CLI won the prize for the best costumes.

In the Media

02nd September 2024 

Info-Chalon (newspaper) Official opening of the resource center for tele-expertise in dermatology in Chalon-sur-Saône.

Read the article (in French)

 

10th September 2024

 Le Journal de Saone et Loire (Newspaper) Official opening of the resource center for tele-expertise in dermatology in Chalon-sur-Saône.

Read the article (in French)

 

29th November 2024

Charente Libre  Handing over the € 2,500 check to the benefit of Cutis Laxa Internationale by  Triathlon de Sireuil

Read the article (in French)

 

Autumn 2024

la Gazette Bonsoise Cutis Laxa Internationale, beyond the frontiers of Bons en Chablais

Read the article (in French)

La Sorbonne University of the Patients

Marie-Claude Boiteux was interviewed for the videos used during the Masterclass at the University for Patients in La Sorbonne (in French) (https://universitedespatients-sorbonne.fr/). The title of the presentation is “From loneliness to an International Organisation”.   see it  here (in French)