RareDERM Coffee-Chat
September 22nd:
Marie-Claude Boiteux moderated the “Coffee-Chat” of Globalskin on the theme “Communicating with members of the association through cultural differences”. She shared her experience within Cutis Laxa International.
Cutis Laxa in Japan
12th September 2026:
The 7th Cutis Laxa Days sometimes have very positive and quite unexpected effects. They allowed Sayaka’s mother to overcome her fears and certain prejudices and to agree to share her testimony during a mini-conference that welcomed about sixty people, and an article in the media. Bravo!
3rd World Congress on Rare Skin Disorders (WCRSD)
1st-3rd July 2026:
The 3rd World Congress on Rare Skin Disorders (WCRSD) was held at the Palais des Congress in Versailles. For this 3rd edition, a plenary session was entirely dedicated to patients.As members of the organizing committee, we had decided to highlight the work that associations do. The theme of this session was mental health in rare dermatological diseases.
Six speakers presented the publications and work done by the organisations :
Mental Wellbeing in Rare Disease;
PRIDD: Validating the Mental Health Impact of Living with a Rare Skin Disease ;
Psychological States of Loneliness, Social Isolation and Psychological Deprivation in Patients with Albinism. ;
The Profound Impact on Mental Health when Living with Ichthyosis: A Qualitative Study ;
Interaction of Psychosocial Factors and Well-Being of Women Caring for a Sick Child: The Impact of the Child’s Level of Dependency ;
Addressing the Mental Health Needs of Rare Skin Disease Patients: Generalized Pustulous Psoriasis Care Network.
A very rich session, of great interest to the audience.
A congress as interesting as ever: moments of exchange with associative “colleagues”,
enriching presentations,
a stand to introduce ourselves,
a poster,
a session dedicated to Cutis Laxa
and a magnificent evening in the stables of the castle.
It was also an opportunity to meet members of Globalskin for a working session on rare dermatological diseases
Caving for Cutis Laxa
20th and 21st June 2026:
Roxanne’s parents are passionate about potholing/caving and, with their club, they organized a weekend of discovery of this original sport, to the benefit of Cutis Laxa Internationale.
Entitled “The Sorcerers’ Patrol”, intended for young and old, it was a hunt for underground treasures in the depths of the Torcieu forest in Dorvan (Ain-France).
A great opportunity to get Cutis Laxa known
Sireuil Triathlon
13th June :
For its 20th edition, the Sireuil Triathlon ran was again dedicated to Cutis Laxa International. Always as festive, as sporty as ever, this faithful event by our side helps us to finance our projects.
Thank you to all the organizers, thank you to all the volunteers, thank you to all the runners.
International Forum of Dermatology
12th June :
International Forum of Dermatology organised in Lisbon by Pierre Fabre Laboratories. Marie-Claude Boiteux’s talk about the results of the study on Tele-expertise in Dermatology in Bourgogne Franche Comté had been registered beforehand as she couldn’t attend in person.
79th World Health Assembly (WHA)
20th May :
Rare Disease Internationale (RDI) had organised an event in Geneva ,
on the occasion of the 79th World Health Assembly (WHA).
Following the adoption, last year, of the resolution for Rare Disorders, it is now necessary to work on the Global Action Plan (GAP) that will implement the recommendations of the resolution.
21st May:
The next day, still in Genève, but this time in the World Health Organisation (WHO) building,
Globalskin had the opportunity to talk in the parallel session « From Resolution to Action : Implementing WHA Resolution on Skin diseases » 
organized by the WHO to hear patient organisations’ voices.
It was an honor to attend it together with ERN-Skin and Globalskin members.
Skiing for the children
20th, 21st and 22nd march
The « Glisse en cœur » days were busy.
In the beautiful ski area of Le Grand Bornand (France) 24 hours of skiing was dedicated to children’s associations.
We had had the great luck to receive €6,000 in November 2025 to help us fund the Cutis Laxa Days.
In March 2026 we were thus present, with volunteers on the tracks to support and encourage all those thanks to whom this amount had been given to us.
After a bright sunny first day, the last relay skiers went down the slope under snowfall.
Two days of joy, solidarity and support for associations.
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
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”