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
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.
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
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.
16th Novembre :
The traditional St Martin’s Fair was cold and wet, but it did not prevent us from running the stand for Cutis Laxa Internationale as long as we could for children to come and play « fishing for ducks» before selecting one of the proposed gifts. It was a great occasion to meet with Roxanne and her parents again.
3rd October :
The annual meeting of FIMARAD (French Network for Rare Skin Disorders) took stock about projects and advances in the network regarding diagnosis, therapeutics and follow-up. The forthcoming publication of an article written together by patients and health professionals on the diagnostic odyssey is of special interest to health authorities.
We were also celebrating the network’s 10th anniversary, an important step marked by Pr Christine Bodemer stepping back and handing over the coordination to Pr Smaïl Hadj-Rabia.
13th September
We traveled back to Bergame for an evening of information and exchanges about what it is like to live with Cutis Laxa.
Roxanne and her parents were with us for this second Italian event with partners and authorities who had organised « Semplicemente Amici ».
Exchanges and questions were very interesting and increased understanding of what Cutis Laxa is and how it impacts patients’ lives.
16th January 2025 : Executive Committee (on line)
This annual meeting highlights the main aims, and projects for the coming years
2nd-3rd July 2025 : Scientific Days
The latest research on each pathology, clinical cases and the work of young researchers were presented so we would be updated on the work and projects led in our European network.
The work done by patient representatives was also honored with Marie-Claude Boiteux’s presentation of the publication « Pregnancy and Family Planning in Rare Disorders – A Heathcare Professionals survey » (see the post on this survey)