CUTIS LAXA : News

Youtube with “Tibo InShape”
New video
Cécile was interviewed by #Tibo InShape on his youtube…
January 8, 2023/by Marie-ClaudeCécile was interviewed by #Tibo InShape on his youtube…

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
UKRAINE
As war still goes on, Ukraine faces a humanitarian crisis and…
December 30, 2022/by Marie-Claude
GOOD-BYE
Time to go home….. It is so hard to leave each other.
…
December 29, 2022/by Marie-Claude…

Breaks and Fun Times
SYMPOSIUM LUNCH BREAK
CHILDREN GAMES
BOAT…
December 29, 2022/by Marie-ClaudeCHILDREN GAMES
BOAT…

Diner Times
PIZZAS
CHINESE WOK
FESTIVE DINER
December 29, 2022/by Marie-ClaudeCHINESE WOK
FESTIVE DINER

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-Claude10th April : Our…

Rare and I live with it
Cécile was interviewed by Handicap.fr for their new podcast
"Rare…
December 19, 2022/by Marie-Claude"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…
December 19, 2022/by Marie-ClaudeListen to the Podcast…

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

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),
organised…
December 3, 2022/by Marie-Claudeorganised…

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-Claude4th 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)
November 28, 2022/by Marie-Claude