CUTIS LAXA : News

Welcome

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-Claude

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-Claude

ERN-Skin : Cutis Laxa Webinar

14th December 2021
Pr Bert CALLEWAERT and Pr Raoul ENGELBERT
shared…
December 15, 2021/by Marie-Claude

DERMATOLOGY DAYS OF PARIS

1st, 2nd & 3rd December 2021
For the first time this year…
December 5, 2021/by Marie-Claude

FRENCH FEDERATION FOR SKIN – CONFERENCE AND ANNUAL MEETING

30th November 2021
The 3rd Conference of the French Federation…
December 1, 2021/by Marie-Claude

French Health Minister’s message

30th November
The 3rd Conference of the French Federation for…
November 30, 2021/by Marie-Claude

FIMARAD – ANNUAL MEETING

 


25th-26th November
FIMARAD (French Network for Rare…
November 30, 2021/by Marie-Claude

ERN-Skin EXECUTIVE COMMITTEE

23rd  November 2021
ERN-Skin Executive Committee

Taking…
November 25, 2021/by Marie-Claude

ePAGS ANNUAL MEETING

4th-5th November

All ePAGS joint annual meeting with Eurordis…
November 6, 2021/by Marie-Claude

IN THE MEDIA

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

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-Claude

NEW MUTATIONS

Even if I cannot tell you more since publications have not yet…
August 5, 2021/by Marie-Claude
Welcome

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-Claude

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-Claude

workgroups, training and information for Patient Representatives (ePAGS

On 18th March
« Good Practice : How to measure results, What…
June 11, 2021/by Marie-Claude

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-Claude

Cutis Laxa Videos ……… N°8 ……. last one

Here is the 8th .....and last.....of our videos
"Advice and…
May 25, 2021/by Marie-Claude

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

Cutis Laxa Videos …. N°6

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

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-Claude

Cutis Laxa Videos….. N°2

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

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