CUTIS LAXA : News

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

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

FUNDRAISING PAGE

Help us raise enough funds to organise the next Cutis Laxa Days.

Go…
April 1, 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

Living with a Rare Disorder in France

Orphanet has just edited its new study about rare disorders in…
March 10, 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

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

Paris Dermatologic Days (JDP)

We were able to attend the JDP online, so as to be visible  despite…
December 2, 2020/by Marie-Claude

Annual Meeting and 2nd Conference of the French Federation for Skin

On 1st December 2020 we attended online the Annual Meeting and…
December 1, 2020/by Marie-Claude

Annual Day of the French Network for Rare Skin Disorders

27th November 2020 :  The Annual FIMARAD meeting (French Health…
November 27, 2020/by Marie-Claude

CUTIS LAXA PATIENT JOURNEYS

We have developped 2 patient journeys based on testimonies from…
November 24, 2020/by Marie-Claude

6th CUTIS LAXA DAYS

SAVE THE DATES
The 6th Cutis Laxa  Days will be held at the…
November 19, 2020/by Marie-Claude

Watch Cecile’s interview

November 10, 2020/by Marie-Claude

All EPAGS ANNUAL MEETING

5th andt 6th November 2020 : Patient Representatives (ePAG) gathered…
November 5, 2020/by Marie-Claude

1st Congress of the French Alliance for Rare Disorders

3rd November 2020 :  The first Congress organised by the French…
November 3, 2020/by Marie-Claude

WHAT IS AN ERN (European Reference Network) ? (Videos)

Set up 3 years ago by the European Commission, they aim to help…
November 2, 2020/by Marie-Claude

RARE SKIN DISORDERS AND COVID-19 : An observationnal study

RARE SKIN DISORDERS AND COVID-19
An observational study was…
October 30, 2020/by Marie-Claude

Acquired Cutis Laxa associated with monoclonal gammapathy or multiple myeloma

A possible improvment of the symptoms in Acquired Cutis Laxa…
October 15, 2020/by Marie-Claude
cmgg-Pr Bert CALLEWAERT

RESEARCH ON ACQUIRED CUTIS LAXA

A scientific study on Acquired Cutis Laxa (ACL) is led by
Pr…
October 15, 2020/by Marie-Claude