CUTIS LAXA : News

The growing role of patient groups in healthcare research.
Patient groups contribute to research in three different ways :
…
March 10, 2024/by Marie-Claude…

They left this world ……
We have just heard, with great grief, about Abdulaziz’s passing.
Born…
February 20, 2024/by Marie-ClaudeBorn…

New Patients, News from Families
Aaxel, Javiel, Lylio, Yamani, Ovinga, Mina, Gisely, Thomaz and…
February 20, 2024/by Marie-Claude
ELASTICITY OF LIFE
This is the title of the book recently published, in French and…
February 20, 2024/by Marie-Claude
Understanding mothers’ experiences through narrative analysis
A study was recently published in « Qualitative Health Research ».…
February 13, 2024/by Marie-Claude
Distribution of CL according to Types and Countries
Our census of Cutis Laxa patients allows today to establish
its…
February 12, 2024/by Marie-Claudeits…

Survey ALL
Carried out between January and April 2023, together with EMMA…
February 10, 2024/by Marie-Claude
KAPCODE Study
Marie-Claude Boiteux took part in writing a new scientific publication :…
February 10, 2024/by Marie-Claude
VDS (Visible Disorders of the Skin) Program
This program has been set up by the “Patient Relationship”…
February 10, 2024/by Marie-Claude
Another booklet recently published
This is for schools and communities to welcome a child with a…
February 2, 2024/by Marie-Claude
Skin Disability Guides
After two years of collaborative work with patients, medical…
February 2, 2024/by Marie-Claude
Social Media Listening
An article has just been published in JEADV :
Patients' testimonies,…
February 2, 2024/by Marie-ClaudePatients' testimonies,…

“What about talking…….about skin Disorders ? “
What about talking … about skin disorders ? :
The French…
February 1, 2024/by Marie-ClaudeThe French…

Dave Jacob’s interview on Grey Genetics Patient Stories Podcast
Dave Jacob, founder fo ThinkGenetic, featured on the Grey Genetics…
January 30, 2024/by Marie-Claude
World Skin Health Coalition (WHSC)
WHSC gathers together all stakeholders concerned with the health…
January 25, 2024/by Marie-Claude
CONECT Project
CONECT Project (Cardio-Ocular NEtwork Connective Tissue)
gathers…
January 15, 2024/by Marie-Claudegathers…

NEW MEMBERS
555
That’s the number of patients who joined CLI, with the…
January 6, 2024/by Marie-ClaudeThat’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…
January 5, 2024/by Marie-Claude
On-Line Activities
Today, a great number of meeting, working groups, workshops,etc…
December 28, 2023/by Marie-Claude
AND ALSO……. IN 2023
16th November 2023 :
Following a first online meeting on…
December 20, 2023/by Marie-ClaudeFollowing 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…
December 13, 2023/by Marie-Claude
Dermatology Days of Paris (JDP)
6th - 8th December 2023
After such a day full of contacts and…
December 9, 2023/by Marie-ClaudeAfter 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…
December 5, 2023/by Marie-Claudethe 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…
November 30, 2023/by Marie-Claude
Canada establishes rare disease Advisory Group
The Government of Canada has announced the establishment of an…
November 20, 2023/by Marie-Claude
French Network for Rare Disorders (FIMARAD) – 8th National Day
17th November 2023 :
In the beautiful setting of the «…
November 17, 2023/by Marie-ClaudeIn the beautiful setting of the «…

ERN-Skin Board Meeting
6th Novembre 2023 :
ERN-Skin Annual Board Meeting.
It…
November 6, 2023/by Marie-ClaudeERN-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…
October 16, 2023/by Marie-Claude
The economics of delayed diagnosis in the United States:
The EveryLife Foundation for Rare Diseases has published a new…
September 29, 2023/by Marie-Claude
Visible Disorders of the Skin
https://www.youtube.com/watch?v=dyMXG4V9ErU&list=PLU4ksc…
September 22, 2023/by Marie-Claude
World Skin Health Day
14th September 2023 :
World Skin Health Day, organised by…
September 14, 2023/by Marie-ClaudeWorld 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…
September 14, 2023/by Marie-Claude