CUTIS LAXA : News
French Network for Rare Disorders (FIMARAD) – 8th National Day
17th November 2023 :
In the beautiful setting of the «…
In the beautiful setting of the «…
ERN-Skin Board Meeting
6th Novembre 2023 :
ERN-Skin Annual Board Meeting.
It…
ERN-Skin Annual Board Meeting.
It…
Psychosocial needs of children with rare diseases and their families
A new article has been published in the Orphanet Journal of Rare…
The economics of delayed diagnosis in the United States:
The EveryLife Foundation for Rare Diseases has published a new…
Visible Disorders of the Skin
https://www.youtube.com/watch?v=dyMXG4V9ErU&list=PLU4ksc…
World Skin Health Day
14th September 2023 :
World Skin Health Day, organised by…
World Skin Health Day, organised by…
Rountables of the World Skin Health Day (in French)
https://365.sfdermato.org/revivez-la-table-ronde-de-la-journ…
Rare Revolution Magazine
in its summer 2023 issue, Rare Revolution Magazine
published…
published…
Japan: Recent advances in rare skin diseases
A new article has been published in the Keio Journal of Medicine…
ERN-Skin eNEWS
In its June 2023 issue,
ERN-Skin eNews mentionned ePAG Advocates
attending…
ERN-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…
You…
AND ALSO…….
25th November 2022 : The Triathlon of Sireuil presented CLI…
The Cutis Laxa “Patient Journey”
The “Patient Journey” seeks to identify the needs that are
specific…
specific…
THEY LEFT THIS WORLD
It is with deep sorrow that we learned that Chiara, in Italy,…
Articles of the French Federation for Skin
Twice a month, the French Federation for Skin publishes (in French)…
NEW MEMBERS
Mc Kenna Rose, Magali, Ezra, Hudson, Amelia, Maui Rose, Julie,…
Patient Representatives at Globalskin Meeting
1st - 2nd June 2023
International Alliance of Dermatology…
International 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…
25 - 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…
Radio « VivreFM » : Health expert, Marie-Claude Boiteux’s interview:
Listen to the interview (in French)
“Patient Education Program (PEP)”
20th & 21st April 2023,
ERN-Skin organised its Scientific…
ERN-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…
Cecile’s short videos N°6
Surgery or Not Surgery , (In French)
https://www.tiktok.com…
https://www.tiktok.com…
Monthly Magazine « Maxi » : Cécile’s testimony « My disorder didn’t stop me finding love »
Read this article (in French)
« Taking stock of the dermatology care in France »
On 28th March,
the National Union of Dermatologists Venereologists…
the 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)
VISIBLE DISORDERS OF THE SKIN
Podcast « Visible disorders of the skin » :
Visible disorders…
Visible disorders…
Dermatology on the brink
IN THE MEDIA
An article was published in the online pages of…
An 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…
Read the original article in…
Dermatology and Venereology Meeting 2023
2nd & 3rd March 2023 :
The National Union of Dermatologists-Venereologists…
The National Union of Dermatologists-Venereologists…
The ethics of prenatal diagnosis
A recent article published in “Maternal Health, Neonatology,…
Monthly newspaper « Le Trombinoscope » – dossier on Rare Disease Day « patients face taxing times and their organisations too ! »
read this article (in French)