2025 will be a great year !
We are supported by big sports events
8th-10th MAY
Trailers and cyclers will give us all their efforts during La Pastourelle
18th MAY
Runners will raise funds for us in Lyon during La Course des Héros
22nd JUNE
The Triathlon de Sireuil is, once again, supporting Cutis laxa Internationale
Many Thanks to all the organisers, volunteers, sportsmen and sportswomen who raise funds and awareness for the Cutis Laxa patients.
03rd-06th December 2024
Dermatology Days of Paris (JDP)
Thanks to our stand during the JDP, I have had the great joy, more than 30 years later, to see again Dr Karim CHERTI.
At that time, he was a junior doctor in the genodermatosis unit at Hôpital Saint Louis in Paris. He was a member of the team who diagnosed my daughter, Cécile, and wrote his thesis on her case.
It was a very moving moment for both of us.
03rd December 2024
6th Conference of the French Federation for Skin (FFP)
This event is unmissable: the opportunity to gather together, evoke the achievements of the year and explore future projects in round-tables and interactive workshops.
It was also the last time I was leading the FFP Conference as my 3 years mandate chairing the FFP has come to its end.
26th November 2024
Pfizer Patient Forum
Marie-Claude Boiteux participated in a roundtable on « Minimising obstacles and maximizing impact: key learnings from pilot projects and advice for action”.
A huge THANK YOU to the leading team of the sport events organised in Sireuil, France (Trail du Brin d’Aillet and Triathlon). Thanks for faithfully supporting us, thanks to the energy you put in organising those events, thanks to the volunteers who work with you and support those sport events.Thanks also, of course, to all the sportsmen/women who participate: you are handing over € 2,500. That is enormous for us !!!
Thanks to you, we will be able to help patients come to Ghent, Belgium, to attend the Cutis Laxa Days and benefit from a consultation with Pr Bert Callewaert, worldwide expert for Cutis Laxa.
On behalf of of all the patients, I am deeply grateful to you.
Marie-Claude Boiteux, Chair
08th November 2024
FIMARAD Annual Meeting
Patient organisation representatives attended the Annual Meeting of the French Network for Rare Skin Disorders.
On this occasion, they especially mentioned the progress of the working group « Diagnosis roving and impasse » with the analysis of the patient survey. The results of this survey are planned for publication
28th-31st October 2024
European Elastin Meeting (EEM 2024) in Reims.
All the scientists working on Elastin were gathered together on the initiative of the teams at Reims University.
These days were fascinating, instructive and created therapeutic hope.
To top it all, it was a great joy to meet Pr Zsolt URBAN from Pittsburgh as well as researchers from Pr Romain DEBRET’s team in Lyon.
All the exchanges, shared moments, the possibility to give patients’ point of view, as well as relaxing times: these were the keys to the success for these 3 days. We also know that future collaborations will result from them.
It was really important to be there.
24th-25th October 2024
ERN-Skin Board Meeting at “Institut Imagine” in Necker Hospital in Paris.
This important annual gathering allow us not only to meet again and make time for face-to-face exchanges on future projects, but also to take stock of what we have achieved during the past year.
16th -17th Septembre 2024 the event “Exp’Ose Ta Peau” (dare to show your skin) was organised in Roubaix by LéoPharma Laboratory. Located in front of the town hall, we were able to raise awareness on skin disorders with passers-by.
Then, in December, during the Dermatology Days of Paris, « Exp’Ose Ta Peau » had, again, a privileged place.
Cutis Laxa update
During the World Congress in Paris in June 2024, an update of the knowledge on Cutis Laxa was presented.
Pathophysiology of CL is represented as a defect of the elastic fibers. In the inherited forms, it is a defect of synthesis/assembly of elastic fibers, due to genetic mutations. When looking at the acquired form of Cutis Laxa, the process is different as it is instead a destruction of elastic fibers that were , at first, normal.
As of today, 18 sub-types have been identified in the inherited forms, together with related disorders such as Arterial Tortuosity Syndrome or MACS Syndrome. These identifications allow a new classification.
The forms with prominent connective tissue features (Tortuosity, Skin, Bones, Emphysema) and those with main neurological features with or witout intra-uterin growth retardation are still there. The validation of this new classification is still ongoing. It will be a better tool for diagnosis, integrating clinical data, ultrastructural findings and pathophysiology. It will be the basis for novel guidelines..
