Good-Bye ERIC

I am so very sad to announce that Eric MOLINIE left this world…
January 2, 2023/by Marie-Claude

4th National Conference of the French Federation for Skin (Videos)

Watch the videos of all the presentations (in French)
December 31, 2022/by Marie-Claude

New Patients

Cutis Laxa Internationale now gathers 517 patients coming from…
December 30, 2022/by Marie-Claude


As war still goes on, Ukraine faces a humanitarian crisis and…
December 30, 2022/by Marie-Claude


Time to go home….. It is so hard to leave each other.
December 29, 2022/by Marie-Claude

Breaks and Fun Times



December 29, 2022/by Marie-Claude

Diner Times




December 29, 2022/by Marie-Claude

Gathering beyond continents…. Patients, Moms and Dads

December 29, 2022/by Marie-Claude

Prof. Dr. Christine Bodemer, MD (Paris, France) : Embedding CL in ERN Skin & ERN-Ithaca

The European Reference Networks (ERNs) set up by the European…
December 27, 2022/by Marie-Claude

Mrs Klára Farkas, MD (Budapest, Hungary) : Potential applications and value of novel skin imaging techniques in connective tissue disorders

In this presentation we introduce novel imaging techniques including…
December 27, 2022/by Marie-Claude

Dr. Laura Muiño Mosquera, MD (Ghent, Belgium) : Cardiovascular Follow-up in CL

Cutis Laxa disorders usually present cardiovascular issues…
December 27, 2022/by Marie-Claude

Prof. Dr. Bert Callewaert (Ghent – Belgium) : CL Classification and Guidelines for Global Management

This new classification will simplify the diagnostic process…
December 27, 2022/by Marie-Claude

16th September 2022 – Collaboration in Recherche

The aim of this event dedicated to research was to set up collaborative…
December 27, 2022/by Marie-Claude

13th and 14th September CLINICS

Pr Bert Callewaert, Dr Karolien Aelbrecht, Mrs Deborah Wille…
December 27, 2022/by Marie-Claude

Dr. Karolien Aelbrecht (Ghent, Belgium) : Patient participation : a cornerstone !

Although the concept of patient participation still lacks of…
December 27, 2022/by Marie-Claude

Mrs Elif Yilmaz Gulec, MD (Istanbul, Turkey) : Cutis Laxa in Turkey : Challenges, Opportunities and Collaborations

Our Cutis Laxa patients are usually referred to us during neonatal…
December 27, 2022/by Marie-Claude

Mrs Marie-Claude Boiteux (Chair Cutis Laxa Internationale – France) : Patients’ and Caregivers’ Perspectives : Patient Journeys

The « Patient Journey » is a personal testimony that reflects…
December 27, 2022/by Marie-Claude

Prof. Dr. Zsolt Urban (Pittsburgh, USA) : American Cutis Laxa Clinics

The study lead by Mrs Pooja Solanki from Pr Urban’s team is…
December 27, 2022/by Marie-Claude

Dr. Björn Fischer-Zirnsak (Berlin, Germany) : The Mitonchondrion and CL

The best known function of mithocondria is energy production…
December 27, 2022/by Marie-Claude

Dr. Thatjana Gardeitchik, MD (Nijmegen, the Netherlands) : Neurometabolic Defects in CL

The underlying molecular defects in Cutis Laxa Sybdromes can…
December 27, 2022/by Marie-Claude

Prof. Dr. Uwe Kornak, MD (Göttingen, Germany): The Secretory Pathway, Glycosylation, and Cutis Laxa

Secreted proteins and membrane proteins have to pass through…
December 27, 2022/by Marie-Claude

Mrs Aude Beyens, MD (Ghent, Belgium): Structural defects of Connective Tissue Proteins and CL

Elastic fiber assembly, or elastogenesis, is a complex process…
December 27, 2022/by Marie-Claude

Prof. Gerhard Sengle (Köln, Germany): Matrix Biology – What can we learn from animal modelling ?

Understanding how the fine tune mechanisms of elastic fibers…
December 27, 2022/by Marie-Claude

Other Events in 2022

1st February: Pharmaceuticals Seminar

10th April : Our…
December 20, 2022/by Marie-Claude

Rare and I live with it

Cécile was interviewed by for their new podcast
December 19, 2022/by Marie-Claude – Podcast « Rare Disorder and I live with it » episode 9 : Cécile’s testimony

Read this article (in French)
Listen to the Podcast…
December 19, 2022/by Marie-Claude

CLI at the Dermatology Days of Paris

29th November – 3rd December 2022 :
Dermatology Days of Paris…
December 15, 2022/by Marie-Claude

Daily newspaper « Charente Libre » : The Triathlon of Sireuil presented CLI with a cheque

Read this article (in French)
December 4, 2022/by Marie-Claude

Canal JDP

On 3rd December 2022, during the Dermatology Days of Paris (JDP),
December 3, 2022/by Marie-Claude

Weekly newspaper « Télé7jours » : Sophie Davant remembers the 10th Cutis Laxa patient discovered during Telethon 2001.

read this article (in French)
December 3, 2022/by Marie-Claude

4th Conference of the French Federation for Skin (Report)

29th November 2022 :

4th Conference of the FFP on the theme…
November 29, 2022/by Marie-Claude : Sophie Davant, French journalist, tells how the Telethon 2001 supported the first research on CL

Read this article (in French)
November 28, 2022/by Marie-Claude


24th & 25th November 2022 :
National and Scientific Days…
November 24, 2022/by Marie-Claude