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
NEW PATIENT JOURNEYS
We have developed 2 patient journeys based on testimonies from our members on what it is like to live with a Cutis Laxa.
Those documents aim to be a tool for health care professionals and patients during a consultation to help them agree on the best possible care on a long term basis.
The Patient Journeys have been updated recently to better fit with today’s knowledge on Cutis Laxa.
CUTIS LAXA WITH ARTERIES AND LUNGS SYMPTOMS
CUTIS LAXA WITH NEURO AND SKELETON SYMPTOMS
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
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”
11th-12th December
Members of ERN-Skin got together for the annual Board Meeting that takes stock of what was done over the year and future projects.
Cutis Laxa was honored thanks to the method of classification established with AI that allows a reduction the diagnosis odyssey. This new classification is more detailed in the page dedicated to the 7th Cutis Laxa Days.
The group of patient representatives (ePAGS) was extended with new members in attendance.
8th October :
Doctissimo press release :
« Skin Diseases – A public health issue that is still underestimated, a collective to make things happen »
8th December :
Le Monde :
« The rise of cosmetic surgery accentuates the lack of dermatologists»
2nd December
The 7th Conference of the French Federation for Skin (FFP) was held, as usual, in Paris Convention Center, as a preamble of the Dermatology Days of Paris (JDP). Therapeutic revolutions, Clinical Trials, Alternatives to Desertification and Integrative Health: 4 themes developed in the round table discussions. They captivated the audience and highlighted the work carried out by the FFP to improve patients’ quality of life.
3rd-6th December
Having a stand in the village of associations during the Dermatological Days of Paris (JDP) is an opportunity, every year, to increase Cutis Laxa’s visibility. It is also an opportunity to meet doctors, researchers and laboratories interested in our pathology and the projects we are carrying out. AND it’s always nice to meet up with our colleagues and friends from the associative world. This year, our visibility increased even more with our poster alongside those of doctors and researchers.
Have a look at the JDP2025 retrospective were Marie-Claude Boiteux talks about the Associations’ village (at 1:04)
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
Together for Rare Diseases (Together4RD) has published a report on the use of public-private partnerships (PPPs) in rare disease research, and the role ERNs have to play in this context in order to boost European competitiveness and drive change for the rare disease community. The report was developed following a high-level conference hosted by MEPs Stine Bosse (Renew Europe, Denmark) and András Kulja (EPP, Hungary), in collaboration with Together4RD, at the European Parliament on 24 September.
Drawing on the discussions held during the conference, the report puts forward a number of action items to facilitate ERN-industry collaboration, thereby accelerating innovation and improving the availability of treatments and care for patients. Some of the actions outlined in the report are:
By combining the expertise of ERNs, the capabilities and resources of industry, and the input of patient communities, this type of PPP has the potential to deliver concrete change and improved health outcomes for all Europeans living with a rare disease. (© Orphanews 2025.11.25)
19th November:
We had the great luck and honor to be selected to benefit from a donation given by the Endowment Fund for Children, which organizes « Glisse en Cœur » which will take place from 20 to 22 March in Le Grand Bornand (A ski resort in the French Alps).
During the inaugural evening of this festive, sportive and solidarity event, we were given a € 6,000 cheque to allow us to fund part of the travel costs for patients to attend the 7th Cutis Laxa Days. An evening full of emotions and joys with « Mercotte » (renowned French food critic) and ski champions.
