The Heroes’ Run

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Cutis Laxa Internationale will participate in the “Heroes’ Run”, in Lyon (France), on 18th May 2025.

To support us and help us raise the needed funds to carry on with our actions for the benefit of patients suffering from Cutis Laxa, you can support one of our heroes by making a donation on their page :

 

 

 

 

Feel free to go and visit the page of Cutis Laxa Internationale regularly : https://www.alvarum.com/charity/2392/challenge/2429

Thank you for standing at our side.

LA PASTOURELLE

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The Sports event  “La Pastourelle” dedicated a special run

“The Salers Night Fever” to the benefit of Cutis Laxa Internationale.

Come and join us on 8th May in Salers (France).

La Pastourelle

SPORTSMEN AND SPORTSWOMEN SUPPORT US

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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 .

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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.

🏆

Thesis on cases of Cutis Laxa

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Dr Thatjana Gardeitchik was a successful candidate with her thesis defence on 9th September 2024.

The title is: « Curious cases of Cutis Laxa , Insights into the diagnostics and patho-mechanisms of metabolic cutis laxa syndromes”.

You can find it online, in English only

(https://www.globalacademicpress.com/ebooks/thatjana_gardeitchik/)

In the Media

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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)

In our hearts and thoughts

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Alas, we are very sad to let you know about two deaths:

Lucille, who joined our private Facebook group in 2010 and was an active member

and

Safaa who was only 18.

To their mourning families we give our support and thoughts in this difficult time.

Since we set up CLI in 2002, 27 patients have passed away. They remain in our hearts and thoughts.

 

Online Activities

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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

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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)

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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.