CUTIS LAXA : News

Rare Revolution Magazine
in its summer 2023 issue, Rare Revolution Magazine
published…
August 31, 2023/by Marie-Claudepublished…

Japan: Recent advances in rare skin diseases
A new article has been published in the Keio Journal of Medicine…
July 26, 2023/by Marie-Claude
ERN-Skin eNEWS
In its June 2023 issue,
ERN-Skin eNews mentionned ePAG Advocates
attending…
June 30, 2023/by Marie-ClaudeERN-Skin eNews mentionned ePAG Advocates
attending…

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-ClaudeYou…

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-Claudespecific…

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
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-ClaudeInternational Alliance of Dermatology…

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-Claude25 - How Social Networks can help better…

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-ClaudeERN-Skin organised its Scientific…

Cécile on the radio
2023.04.19
Cécile was interviewed on the French Radio…

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-Claudehttps://www.tiktok.com…

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-Claudethe National Union of Dermatologists Venereologists…

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-ClaudeVisible disorders…

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

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-ClaudeRead the original article in…

Dermatology and Venereology Meeting 2023
2nd & 3rd March 2023 :
The National Union of Dermatologists-Venereologists…
March 5, 2023/by Marie-ClaudeThe National Union of Dermatologists-Venereologists…

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-Claudehttps://www.tikt…

Cécile’s Short Videos N°4
Thank you Mum for all you do for the patients (in French)
h…
February 4, 2023/by Marie-Claudeh…

Cécile’s Short Videos N°3
Cutis Laxa is in all the body (in French)
https://www.tikto…
February 3, 2023/by Marie-Claudehttps://www.tikto…

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-Claudehttps://www.tiktok.com/@ceci…