CUTIS LAXA : News

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

CUTIS LAXA WHITE BOOK

Since  Cutis Laxa Internationale was set up, we have received…
March 31, 2021/by Marie-Claude

The French Federation for Skin published its plea

The French Federation for skin is publishing its plea aiming…
March 17, 2021/by Marie-Claude

Painting contest

1st prize in the 14-18 age range.
The drawing competititon…
March 15, 2021/by Marie-Claude

Living with a Rare Disorder in France

Orphanet has just edited its new study about rare disorders in…
March 10, 2021/by Marie-Claude

Globalskin (International Organisation for Skin Disorders) held two events early this year

On 25th February : Webinar : « The Power of the Patient Community…
March 4, 2021/by Marie-Claude

Rare 2030 conference update

On 23rd February : The European Commissioner for Health and…
February 25, 2021/by Marie-Claude

RARE 2030

On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis…
February 23, 2021/by Marie-Claude
Welcome

New Members, News from the Families

Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne,…
February 15, 2021/by Marie-Claude

Rare Disease International (RDI) Activities

Rare Disease International (RDI) organised several events in…
February 4, 2021/by Marie-Claude

“Hacking Health” Challenge in Lyon (France)

During three days (14th, 15th and 16th January 2021) we took…
January 20, 2021/by Marie-Claude

Vaccination advices

A vaccination campaign against SARS-CoV-2 (COVID-19) infection…
January 11, 2021/by Marie-Claude

20 YEARS AGO ……

Cécile was diagnosed in 1992.

8 years later, she appeared…
December 22, 2020/by Marie-Claude

Living with …. Cutis Laxa

The French monthly magazine "La Revue du Praticien" (The Medical…
December 15, 2020/by Marie-Claude

Patients Representatives’ (EPAGs) work in 2019-2020 in the European Reference Network-Skin (ERN-Skin)

During the 5th annual meeting of the French Health Network FIMARAD…
December 9, 2020/by Marie-Claude

e-Book edited by the French Federation for Skin (FFP)

FFP has just issues its first e-book on :

"Cutaneous disorders…
December 8, 2020/by Marie-Claude