SPORTSMEN AND SPORTSWOMEN SUPPORT US

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.

cmgg-Pr Bert CALLEWAERT

Astrazeneca awarded its « Scientific Prize 2024 » to Pr Bert Callewaert .

On 12th December 2024, Astrazeneca awarded its « Scientific Prize 2024 » to Pr Bert Callewaert .

We are very happy and proud that Pr Callewaert is one of the rare worldwide experts on Cutis Laxa. He is awarded the prize for his research on congenital rare diseases of elastic fibers, including Cutis Laxa and profibrotic diseases such as Myhre’s syndrome. His research has contributed to the molecular and clinical characterization of these diseases.

Together with his team, he works on very rare forms of Cutis Laxa and identified several new genes and entities within the Cutis Laxa spectrum.

« Elastic fibers play a crucial role in the elasticity and mechanical properties of tissues such as the skin, lungs and blood vessels. We studied cutis laxa, a group of conditions characterized by loose and excessive skin folds, and Myhre’s syndrome, in which tissues harden or heal, to understand the structure and function of elastic fibers. This knowledge offers the possibility of finding treatments for age-related disorders. » (Pr Bert Callewaert ©Fondation AstraZeneca)

The AstraZeneca Award recognizes the innovative nature of his work and his contribution to the advancement of science.

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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)

Online Activities

According to the rythm established in 2024, attending numerous meetings and webinars online meant better progress with some projects and greater knowledge and competencies to carry on raising patients’ voice

Dermatology Days of Paris

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.

6th Conference of the French Federation for Skin (FFP)

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.

Patient Forum

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”.

THANK YOU

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

FIMARAD Annual Meeting

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

European Elastin Meeting

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.