3rd MAI à BERGAME (ItalY)

Thanks to Roberto Trapletti, several towns in the Region of Bergame mobilized for Daniel, suffering from Cutis Laxa, to organize events to the benefit of Cutis Laxa Internationale.

The Chair, Marie-Claude Boiteux together with Cécile travelled to Bergame to support this great initiative and answer  jounalists’ questions for the local television channel.

It was a beautiful first event and a strong commitment from the region’s authorities that generated € 5,900 in grants and donations.

Globalskin Conference

23rd-26th April 2025 :

Globalskin had chosen Prague to held its biannual conference.

It is always a great pleasure to meet again with patient representatives colleagues coming from every part of the world.

Three days of  work, exchange, reflections and building projects united us and gave us the necessary energy to advocate for patients.

 

This year had a special taste as Marie-Claude Boiteux received the collaboration award during the closing diner.

It is a great recognition of the work she is doing for Cutis Laxa patients and for all those who are concerned by a rare skin disorder.

Stakeholders’ National Conference of Dermatology

3rd April 2025 :

Patient organisations representatives met up in Paris to take part in the Stakeholders’ National Conference of Dermatology organised by the French Society of Dermatology (SFD).

Dermatology is facing many issues (i.e. lack of young dermatologists) and all stakeholders must work together, hand in hand, to find solutions for patients to receive the care they deserve.

4th National Plan for Rare Disorders in France

On 25th Février, the 4th National Plan for Rare Disorders was finally launched in France.  Long awaited, but delayed due to the political context, it aims to widen and pursue the work done with the previous Plans. It is based on 4 axes :

  • Improving the life and care pathway (strengthening city-hospital links, strengthening Therapeutic Patient Education, developing specific actions for transition periods, raising awareness, training and informing, mobilizing investigator centers in research);
  • Facilitating and accelerating diagnosis (support “L’Observatoire du Diagnostic” (French statutory organisation promoting diagnostic optimisation), Integrate fetopathology into the patient’s pathway, strengthen foresight in the field of genetics, promote antenatal and neonatal screening, give a diagnosis to each patient, promote new technologies and health data.
  • Promoting access to treatments (strengthen access to innovative treatments, strengthen the development of new therapies, organize real-life data collection for early and compassionate access, support access to therapeutic innovation coordinated with Europe);
  • Developing databases and biobanks (improve the collection and reuse of health data, strengthen biobanks and their use for research purposes, use health databases for research purposes, strengthen the sharing of health data in connection with Europe).

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.

Dermatology-Venerology Meeting

30th-31st  January 2025 :

Dermatology-Venerology Meeting organised in Paris by the National Union of Dermatologists-Venerologists (SNVD).

It gave CLI the opportunity to speak during a round table dedicated to partnerships between patient organisations and SNDV.

And to answer participants’ questions

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.

🏆

Thesis on cases of Cutis Laxa

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

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)