CUTIS LAXA : News
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…
Other Events in 2022
1st February: Pharmaceuticals Seminar
10th April : Our…
10th April : Our…
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…
CLI at the Dermatology Days of Paris
29th November – 3rd December 2022 :
Dermatology Days of Paris…
Dermatology Days of Paris…
Daily newspaper « Charente Libre » : The Triathlon of Sireuil presented CLI with a cheque
Read this article (in French)
Canal JDP
On 3rd December 2022, during the Dermatology Days of Paris (JDP),
organised…
organised…
Weekly newspaper « Télé7jours » : Sophie Davant remembers the 10th Cutis Laxa patient discovered during Telethon 2001.
read this article (in French)
4th Conference of the French Federation for Skin (Report)
29th November 2022 :
4th Conference of the FFP on the theme…
4th Conference of the FFP on the theme…
Public.fr : Sophie Davant, French journalist, tells how the Telethon 2001 supported the first research on CL
Read this article (in French)
FIMARAD ANNUAL METING
24th & 25th November 2022 :
National and Scientific Days…
National and Scientific Days…
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 :…
Diagnosis Roving and Deadlock
The workgroup of FIMARAD (Rare Dermatologic Disorders French…
ERN-Skin : Cutis Laxa Webinar
14th December 2021
Pr Bert CALLEWAERT and Pr Raoul ENGELBERT
shared…
Pr Bert CALLEWAERT and Pr Raoul ENGELBERT
shared…
DERMATOLOGY DAYS OF PARIS
1st, 2nd & 3rd December 2021
For the first time this year…
For the first time this year…
French Health Minister’s message
30th November
The 3rd Conference of the French Federation for…
The 3rd Conference of the French Federation for…
NEW MUTATIONS
Even if I cannot tell you more since publications have not yet…
In the Media
They talk about Cutis Laxa :
On 16th March, Chiara’s testimony…
On 16th March, Chiara’s testimony…
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…