CUTIS LAXA : News
![deuil](https://www.cutislaxa.org/wp-content/uploads/2023/06/deuil-1-705x659.jpg)
They left this world ……
We have just heard, with great grief, about Abdulaziz’s passing.
Born…
February 20, 2024/by Marie-ClaudeBorn…
![Welcome Welcome](https://www.cutislaxa.org/wp-content/uploads/2018/01/welcome-705x529.jpg)
New Patients, News from Families
Aaxel, Javiel, Lylio, Yamani, Ovinga, Mina, Gisely, Thomaz and…
February 20, 2024/by Marie-Claude![Elasticitéy of Life](https://www.cutislaxa.org/wp-content/uploads/2024/02/Elasticitey-of-Life.jpg)
ELASTICITY OF LIFE
This is the title of the book recently published, in French and…
February 20, 2024/by Marie-Claude![gene](https://www.cutislaxa.org/wp-content/uploads/2017/07/gene.jpg)
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…
![Enquête ALL](https://www.cutislaxa.org/wp-content/uploads/2024/02/Enquete-ALL-705x394.jpg)
Survey ALL
Carried out between January and April 2023, together with EMMA…
February 10, 2024/by Marie-Claude![Podcast Kapcode](https://www.cutislaxa.org/wp-content/uploads/2024/02/Podcast-Kapcode-705x243.jpg)
KAPCODE Study
Marie-Claude Boiteux took part in writing a new scientific publication :…
February 10, 2024/by Marie-Claude![Podcast VDS](https://www.cutislaxa.org/wp-content/uploads/2024/02/Podcast-VDS-705x444.jpg)
VDS (Visible Disorders of the Skin) Program
This program has been set up by the “Patient Relationship”…
February 10, 2024/by Marie-Claude![Image livret Fimarad](https://www.cutislaxa.org/wp-content/uploads/2024/02/Image-livret-Fimarad.jpg)
Another booklet recently published
This is for schools and communities to welcome a child with a…
February 2, 2024/by Marie-Claude![handicap invisible](https://www.cutislaxa.org/wp-content/uploads/2024/02/handicap-invisible.jpg)
Skin Disability Guides
After two years of collaborative work with patients, medical…
February 2, 2024/by Marie-Claude![gene](https://www.cutislaxa.org/wp-content/uploads/2017/07/gene.jpg)
Social Media Listening
An article has just been published in JEADV :
Patients' testimonies,…
February 2, 2024/by Marie-ClaudePatients' testimonies,…
![Image petits citoyens](https://www.cutislaxa.org/wp-content/uploads/2024/02/Image-petits-citoyens-508x705.jpg)
“What about talking…….about skin Disorders ? “
What about talking … about skin disorders ? :
The French…
February 1, 2024/by Marie-ClaudeThe French…
![Médias](https://www.cutislaxa.org/wp-content/uploads/2022/02/Medias.jpg)
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![Logo WHSC](https://www.cutislaxa.org/wp-content/uploads/2024/02/Logo-WHSC.jpg)
World Skin Health Coalition (WHSC)
WHSC gathers together all stakeholders concerned with the health…
January 25, 2024/by Marie-Claude![CONECT Logo](https://www.cutislaxa.org/wp-content/uploads/2024/02/CONECT-Logo-705x705.jpg)
CONECT Project
CONECT Project (Cardio-Ocular NEtwork Connective Tissue)
gathers…
January 15, 2024/by Marie-Claudegathers…
![Virginie Bros-Facer](https://www.cutislaxa.org/wp-content/uploads/2024/02/Virginie-Bros-Facer.jpg)
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](https://www.cutislaxa.org/wp-content/uploads/2024/02/On-line.jpg)
On-Line Activities
Today, a great number of meeting, working groups, workshops,etc…
December 28, 2023/by Marie-Claude![Logo Photo original+CLI](https://www.cutislaxa.org/wp-content/uploads/2019/01/Logo-Photo-originalCLI.jpg)
AND ALSO……. IN 2023
16th November 2023 :
Following a first online meeting on…
December 20, 2023/by Marie-ClaudeFollowing a first online meeting on…
![France](https://www.cutislaxa.org/wp-content/uploads/2020/02/France.jpg)
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![logo JDP](https://www.cutislaxa.org/wp-content/uploads/2024/02/logo-JDP.jpg)
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…
![logo FFP](https://www.cutislaxa.org/wp-content/uploads/2019/01/logo-FFP.jpg)
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…
![5ConfFFPMC](https://www.cutislaxa.org/wp-content/uploads/2024/02/5ConfFFPMC-705x396.jpg)
Replays of the 5th Conference of the FFP (in French)
https://www.youtube.com/channel/UCvbExcayC…
![France](https://www.cutislaxa.org/wp-content/uploads/2020/02/France.jpg)
« United for Health»
It is a Parlementary club established after a survey made by…
November 30, 2023/by Marie-Claude![canada](https://www.cutislaxa.org/wp-content/uploads/2020/02/canada-rotated.jpg)
Canada establishes rare disease Advisory Group
The Government of Canada has announced the establishment of an…
November 20, 2023/by Marie-Claude![Logo FIMARAD](https://www.cutislaxa.org/wp-content/uploads/2019/01/Logo-FIMARAD-705x518.jpg)
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 «…
![IMG_20231106_083351](https://www.cutislaxa.org/wp-content/uploads/2024/02/IMG_20231106_083351-705x518.jpg)
ERN-Skin Board Meeting
6th Novembre 2023 :
ERN-Skin Annual Board Meeting.
It…
November 6, 2023/by Marie-ClaudeERN-Skin Annual Board Meeting.
It…
![Logo Orphanews](https://www.cutislaxa.org/wp-content/uploads/2024/02/Logo-Orphanews.jpg)
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![usa](https://www.cutislaxa.org/wp-content/uploads/2020/02/usa.jpg)
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![VDS](https://www.cutislaxa.org/wp-content/uploads/2024/02/VDS-705x393.jpg)
Visible Disorders of the Skin
https://www.youtube.com/watch?v=dyMXG4V9ErU&list=PLU4ksc…
September 22, 2023/by Marie-Claude![IMG_20230914_141702](https://www.cutislaxa.org/wp-content/uploads/2024/02/IMG_20230914_141702-705x482.jpg)
World Skin Health Day
14th September 2023 :
World Skin Health Day, organised by…
September 14, 2023/by Marie-ClaudeWorld Skin Health Day, organised by…
![Journée mondiale Peau](https://www.cutislaxa.org/wp-content/uploads/2024/02/Journee-mondiale-Peau-705x419.jpg)
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![Médias](https://www.cutislaxa.org/wp-content/uploads/2022/02/Medias.jpg)
Rare Revolution Magazine
in its summer 2023 issue, Rare Revolution Magazine
published…
August 31, 2023/by Marie-Claudepublished…
![Japon](https://www.cutislaxa.org/wp-content/uploads/2024/02/Japon.png)
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![Médias](https://www.cutislaxa.org/wp-content/uploads/2022/02/Medias.jpg)
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…