CUTIS LAXA : News
16th September 2022 – Collaboration in Recherche
The aim of this event dedicated to research was to set up collaborative…
13th and 14th September CLINICS
Pr Bert Callewaert, Dr Karolien Aelbrecht, Mrs Deborah Wille…
Dr. Karolien Aelbrecht (Ghent, Belgium) : Patient participation : a cornerstone !
Although the concept of patient participation still lacks of…
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…
Mrs Marie-Claude Boiteux (Chair Cutis Laxa Internationale – France) : Patients’ and Caregivers’ Perspectives : Patient Journeys
The « Patient Journey » is a personal testimony that reflects…
Prof. Dr. Zsolt Urban (Pittsburgh, USA) : American Cutis Laxa Clinics
The study lead by Mrs Pooja Solanki from Pr Urban’s team is…
Dr. Björn Fischer-Zirnsak (Berlin, Germany) : The Mitonchondrion and CL
The best known function of mithocondria is energy production…
Dr. Thatjana Gardeitchik, MD (Nijmegen, the Netherlands) : Neurometabolic Defects in CL
The underlying molecular defects in Cutis Laxa Sybdromes can…
Prof. Dr. Uwe Kornak, MD (Göttingen, Germany): The Secretory Pathway, Glycosylation, and Cutis Laxa
Secreted proteins and membrane proteins have to pass through…
Mrs Aude Beyens, MD (Ghent, Belgium): Structural defects of Connective Tissue Proteins and CL
Elastic fiber assembly, or elastogenesis, is a complex process…
Prof. Gerhard Sengle (Köln, Germany): Matrix Biology – What can we learn from animal modelling ?
Understanding how the fine tune mechanisms of elastic fibers…
Rare and I live with it
Cécile was interviewed by Handicap.fr for their new podcast
"Rare…
"Rare…
Handicap.fr – Podcast « Rare Disorder and I live with it » episode 9 : Cécile’s testimony
Read this article (in French)
Listen to the Podcast…
Listen to the Podcast…
Canal JDP
On 3rd December 2022, during the Dermatology Days of Paris (JDP),
organised…
organised…
Journal Radiorg (Belgium)
28th February 2022 :
Grand Angle : Journal Radiorg (Belgium)
Testimony…
Grand Angle : Journal Radiorg (Belgium)
Testimony…
La Gazette Bonsoise
Winter 2022 :
La Gazette Bonsoise : Associations’ Life :…
La Gazette Bonsoise : Associations’ Life :…
NEW MUTATIONS
4 new genetic mutations were recently found:
LOX :…
LOX :…
NEW MUTATIONS
Even if I cannot tell you more since publications have not yet…
Cutis Laxa Videos ……… N°8 ……. last one
Here is the 8th .....and last.....of our videos
"Advice and…
"Advice and…
Cutis Laxa Videos …… N°7
Treatments and surgeries are the topics of our 7th video about…
Cutis Laxa Videos …. N°6
Let's watch the 6th episode of our videos about Cutis Laxa.
Today…
Today…
Cutis Laxa Videos …… N°5
Today's topic is our organisation "Cutis Laxa Internationale"…
Cutis Laxa Videos …… N°4
Today I talk about the impact of the disorder in adulthood: love…
Cutis Laxa Videos …….. N°3
Here is the third episode of our videos.
A painful and emotional…
A painful and emotional…
Cutis Laxa Videos….. N°2
Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude…
Marie-Claude…
Cécile talks about Cutis Laxa
Here is a new video that has just been posted on social media.
Cécile…
Cécile…
Cutis Laxa Videos…… N°1
Here is the first of 8 videos edited by EwenLife on their Youtube…
They talk about us !!
EwenLife is dedicated to rare disorders. They made an interview…
CUTIS LAXA WHITE BOOK
Since Cutis Laxa Internationale was set up, we have received…
20 YEARS AGO ……
Cécile was diagnosed in 1992.
8 years later, she appeared…
8 years later, she appeared…
Living with …. Cutis Laxa
The French monthly magazine "La Revue du Praticien" (The Medical…
6th CUTIS LAXA DAYS
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the…
The 6th Cutis Laxa Days will be held at the…
