CUTIS LAXA : News

They left this world ……

We have just heard, with great grief, about Abdulaziz’s passing.
Born…
February 20, 2024/by Marie-Claude
Welcome

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

Distribution of CL according to Types and Countries

Our census of  Cutis Laxa patients allows today to establish
its…
February 12, 2024/by Marie-Claude

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-Claude

“What about talking…….about skin Disorders ? “

What about talking … about skin disorders ? :
The French…
February 1, 2024/by Marie-Claude

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-Claude

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-Claude

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-Claude

5th National Conference of the French Federation for Skin

5th December 2023 :
the French Federation for Skin organised…
December 5, 2023/by Marie-Claude

Replays of the 5th Conference of the FFP (in French)

 

 
https://www.youtube.com/channel/UCvbExcayC…
December 5, 2023/by Marie-Claude

« 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-Claude

ERN-Skin Board Meeting

6th Novembre 2023 :

ERN-Skin Annual Board Meeting.

It…
November 6, 2023/by Marie-Claude

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-Claude

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

Rare Revolution Magazine

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

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-Claude