CUTIS LAXA : News

NEW CONTACTS, NEW FAMILIES
Cutis Laxa Internationale now gathers 501 patients coming from…
February 1, 2022/by Marie-Claude
UNITED NATIONS AND INTERNATIONAL NEWS
16th December2021 The United Nations General Assembly voted the…
January 20, 2022/by Marie-Claude
NEW MUTATIONS
4 new genetic mutations were recently found:
LOX :…
January 15, 2022/by Marie-ClaudeLOX :…

Diagnosis Roving and Deadlock
The workgroup of FIMARAD (Rare Dermatologic Disorders French…
January 5, 2022/by Marie-Claude
AND ALSO …. IN 2021
29th September 2021
Webinar on e-Health with the French Skin…
December 30, 2021/by Marie-ClaudeWebinar on e-Health with the French Skin…

ERN-Skin : Cutis Laxa Webinar
14th December 2021
Pr Bert CALLEWAERT and Pr Raoul ENGELBERT
shared…
December 15, 2021/by Marie-ClaudePr Bert CALLEWAERT and Pr Raoul ENGELBERT
shared…

DERMATOLOGY DAYS OF PARIS
1st, 2nd & 3rd December 2021
For the first time this year…
December 5, 2021/by Marie-ClaudeFor the first time this year…

FRENCH FEDERATION FOR SKIN – CONFERENCE AND ANNUAL MEETING
30th November 2021
The 3rd Conference of the French Federation…
December 1, 2021/by Marie-ClaudeThe 3rd Conference of the French Federation…

French Health Minister’s message
30th November
The 3rd Conference of the French Federation for…
November 30, 2021/by Marie-ClaudeThe 3rd Conference of the French Federation for…

FIMARAD – ANNUAL MEETING
25th-26th November
FIMARAD (French Network for Rare…

ERN-Skin EXECUTIVE COMMITTEE
23rd November 2021
ERN-Skin Executive Committee
Taking…
November 25, 2021/by Marie-ClaudeERN-Skin Executive Committee
Taking…

ePAGS ANNUAL MEETING
4th-5th November
All ePAGS joint annual meeting with Eurordis…
November 6, 2021/by Marie-ClaudeAll ePAGS joint annual meeting with Eurordis…

IN THE MEDIA
6th October : Le Dauphiné – Bons en Chablais :
On the…
October 30, 2021/by Marie-ClaudeOn the…

PINK OCTOBER AND BLUE WALK
26th September 2021 , 3rd, 9th and 16th October 2021
…
October 16, 2021/by Marie-Claude…

GLOBALSKIN ANNUAL MEETING
29th September 2021 : Globalskin Annual Meeting.
The International…
September 29, 2021/by Marie-ClaudeThe International…

NEW MUTATIONS
Even if I cannot tell you more since publications have not yet…
August 5, 2021/by Marie-Claude
Our « Big Cutis Laxa Family » grows day after day.
Its new members : Joanna, Ayse and her two brothers, Delphine,…
August 4, 2021/by Marie-Claude
In the Media
They talk about Cutis Laxa :
On 16th March, Chiara’s testimony…
July 31, 2021/by Marie-ClaudeOn 16th March, Chiara’s testimony…

The French Federation for SKIN (FFP) is working hard
Since the beginning of the year, Georges Martinho, FFP General…
July 15, 2021/by Marie-Claude
ERN-Skin Activities
19th February : First ERN-Skin Scientific Day
114 doctors and…
June 15, 2021/by Marie-Claude114 doctors and…

workgroups, training and information for Patient Representatives (ePAGS
On 18th March
« Good Practice : How to measure results, What…
June 11, 2021/by Marie-Claude« Good Practice : How to measure results, What…

The first half of the year was quite busy with Eurordis
On 12th May : Annual Members meeting
on 10th June : Annual…
June 11, 2021/by Marie-Claudeon 10th June : Annual…

Cutis Laxa Videos ……… N°8 ……. last one
Here is the 8th .....and last.....of our videos
"Advice and…
May 25, 2021/by Marie-Claude"Advice and…

Cutis Laxa Videos …… N°7
Treatments and surgeries are the topics of our 7th video about…
May 17, 2021/by Marie-Claude
Patients’ inequalities of treatment
Patients’ inequalities of treatment
(Opinion piece published…
May 15, 2021/by Marie-Claude(Opinion piece published…

Cutis Laxa Videos …. N°6
Let's watch the 6th episode of our videos about Cutis Laxa.
Today…
May 10, 2021/by Marie-ClaudeToday…

Cutis Laxa Videos …… N°5
Today's topic is our organisation "Cutis Laxa Internationale"…
May 3, 2021/by Marie-Claude
Cutis Laxa Videos …… N°4
Today I talk about the impact of the disorder in adulthood: love…
April 26, 2021/by Marie-Claude
Cutis Laxa Videos …….. N°3
Here is the third episode of our videos.
A painful and emotional…
April 19, 2021/by Marie-ClaudeA painful and emotional…

Cutis Laxa Videos….. N°2
Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude…
April 12, 2021/by Marie-ClaudeMarie-Claude…

Cécile talks about Cutis Laxa
Here is a new video that has just been posted on social media.
Cécile…
April 8, 2021/by Marie-ClaudeCécile…

Cutis Laxa Videos…… N°1
Here is the first of 8 videos edited by EwenLife on their Youtube…
April 7, 2021/by Marie-Claude
They talk about us !!
EwenLife is dedicated to rare disorders. They made an interview…
April 7, 2021/by Marie-Claude