CUTIS LAXA : News
“What about talking…….about skin Disorders ? “
What about talking … about skin disorders ? :
The French…
The French…
Dave Jacob’s interview on Grey Genetics Patient Stories Podcast
Dave Jacob, founder fo ThinkGenetic, featured on the Grey Genetics…
World Skin Health Coalition (WHSC)
WHSC gathers together all stakeholders concerned with the health…
CONECT Project
CONECT Project (Cardio-Ocular NEtwork Connective Tissue)
gathers…
gathers…
NEW MEMBERS
555
That’s the number of patients who joined CLI, with the…
That’s the number of patients who joined CLI, with the…
Virginie BROS-FACER, new CEO of Eurordis
In September 2023, Yann Le Cam announced his decision to retire…
On-Line Activities
Today, a great number of meeting, working groups, workshops,etc…
AND ALSO……. IN 2023
16th November 2023 :
Following a first online meeting on…
Following a first online meeting on…
Reaffirming at all levels the commitment to and participation of users
In an article published on 12th December 2023 on the occasion…
Dermatology Days of Paris (JDP)
6th - 8th December 2023
After such a day full of contacts and…
After such a day full of contacts and…
5th National Conference of the French Federation for Skin
5th December 2023 :
the French Federation for Skin organised…
the French Federation for Skin organised…
Replays of the 5th Conference of the FFP (in French)
https://www.youtube.com/channel/UCvbExcayC…
« United for Health»
It is a Parlementary club established after a survey made by…
Canada establishes rare disease Advisory Group
The Government of Canada has announced the establishment of an…
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…