CUTIS LAXA : News

GLOBAL RESEARCH ON THE IMPACT OF DERMATOLOGICAL DISEASES (GRIDD)

If you are a dermatology patient THIS IS VERY IMPORTANT
You…
June 29, 2023/by Marie-Claude

AND ALSO…….

25th November 2022 : The Triathlon of  Sireuil presented CLI…
June 27, 2023/by Marie-Claude

The Cutis Laxa “Patient Journey”

The “Patient Journey” seeks to identify the needs that are
specific…
June 26, 2023/by Marie-Claude

THEY LEFT THIS WORLD

It is with deep sorrow that we learned that Chiara, in Italy,…
June 22, 2023/by Marie-Claude

Articles of the French Federation for Skin

Twice a month, the French Federation for Skin publishes (in French)…
June 18, 2023/by Marie-Claude
Welcome

NEW MEMBERS

Mc Kenna Rose, Magali, Ezra, Hudson, Amelia, Maui Rose, Julie,…
June 10, 2023/by Marie-Claude

Patient Representatives at Globalskin Meeting

1st - 2nd  June 2023

International Alliance of Dermatology…
June 4, 2023/by Marie-Claude

Podcast Pierre Fabre-Kapcode « How Social Networks can help better understand Patient’s experience

Café Healthtech Podcast
25 - How Social Networks can help better…
May 24, 2023/by Marie-Claude

Inter-Organisations’ contribution to the Local Projects for Health (PRS)

The French Federation for Skin (FFP), the French Society of Dermatology…
May 15, 2023/by Marie-Claude

Radio « VivreFM » : Health expert, Marie-Claude Boiteux’s interview:

Listen to the interview (in French)
 
May 11, 2023/by Marie-Claude

“Patient Education Program (PEP)”

20th & 21st April 2023,

ERN-Skin organised its Scientific…
April 25, 2023/by Marie-Claude

Cécile on the radio

 

2023.04.19
Cécile was interviewed on the French Radio…
April 20, 2023/by Marie-Claude

England recently published its 2nd Rare Diseases Action Plan:

the main aims of this Action Plan are to implement the key priorities…
April 15, 2023/by Marie-Claude

Cecile’s short videos N°6

Surgery or Not Surgery , (In French)
https://www.tiktok.com…
April 3, 2023/by Marie-Claude

Monthly Magazine « Maxi » : Cécile’s testimony « My disorder didn’t stop me finding love »

Read this article (in French)
April 3, 2023/by Marie-Claude

« Taking stock of the dermatology care in France »

On 28th March,

the National Union of Dermatologists Venereologists…
March 28, 2023/by Marie-Claude

20 minutes Brut on line : « Suffering from Cutis Laxa, Amélie, 18, looks like a 60 y.o. woman »

Read this article (in French)
March 28, 2023/by Marie-Claude

VISIBLE DISORDERS OF THE SKIN

Podcast « Visible disorders of the skin » :
Visible disorders…
March 15, 2023/by Marie-Claude

Dermatology on the brink

IN THE MEDIA
An article was published in the online pages of…
March 14, 2023/by Marie-Claude

Daily newspaper « Le Monde » editorial « Dermatology is on the brink »

Read the translation in English
Read the original article in…
March 11, 2023/by Marie-Claude

Dermatology and Venereology Meeting 2023

2nd & 3rd March 2023 :

The National Union of Dermatologists-Venereologists…
March 5, 2023/by Marie-Claude

The ethics of prenatal diagnosis

A recent article published in “Maternal Health, Neonatology,…
February 28, 2023/by Marie-Claude

Monthly newspaper « Le Trombinoscope » – dossier on Rare Disease Day « patients face taxing times and their organisations too ! »

read this article (in French)
February 28, 2023/by Marie-Claude

Daily newspaper « Le Monde » Grand Angle : dossier on Rare Disease

Read this article (in French
February 28, 2023/by Marie-Claude

Cécile’s Short Videos N°5

About Cutis Laxa International (in French)
https://www.tikt…
February 5, 2023/by Marie-Claude

Cécile’s Short Videos N°4

Thank you Mum for all you do for the patients (in French)
h…
February 4, 2023/by Marie-Claude

Cécile’s Short Videos N°3

Cutis Laxa is in all the body (in French)
https://www.tikto…
February 3, 2023/by Marie-Claude

Cécile’s Short Videos N°2

I have never lost HOPE that my dream will come true (in Fren…
February 2, 2023/by Marie-Claude

Teachers’ role in the inclusion of students with rare diseases

A new study published in “Frontiers in Psychology” investigated…
February 2, 2023/by Marie-Claude

Cécile’s short videos N°1

What is Cutis Laxa (in French)
https://www.tiktok.com/@ceci…
February 1, 2023/by Marie-Claude

ERN-Skin ANNUAL BOARD MEETING

13th January 2023 :
ERN-Skin Board Meeting.

2023 is a transitional…
January 13, 2023/by Marie-Claude

A NEW MUTATION : EMILIN1

Adamo et al. describe a cutis laxa syndrome caused by bi-allelic…
January 12, 2023/by Marie-Claude

Youtube with “Tibo InShape”

New video
Cécile was interviewed by #Tibo InShape on his youtube…
January 8, 2023/by Marie-Claude