CUTIS LAXA : News
European Disability Card
Members of the European Parliament approved the provisional…
Scotland publishes first Genomic Medicine Strategy
The 2024-2029 plan intends to create a more coordinated genomic…
In Belgium, the Federation RaDiOrg for rare disorders publishes propositions for a better future for people living with a rare disorder.
The current Belgian Plan for Rare Disorders was established in…
IN THE MEDIA
06th March 2024 Le Monde (French Newspaper)
Rare Disorders -…
Rare Disorders -…
NOT JUST MY SKIN
The World Skin Health Coalition (WSHC) ended its campaign «…
Sweden launches its first national strategy on Rare Disorders
The National Council for Health and Well-Being (CNSB) identifies…
Canada takes steps towards improving rare disease care.
The network RareKids-CAN and the Canadian Network for Rare Disorders…
The growing role of patient groups in healthcare research.
Patient groups contribute to research in three different ways :
…
…
They left this world ……
We have just heard, with great grief, about Abdulaziz’s passing.
Born…
Born…
New Patients, News from Families
Aaxel, Javiel, Lylio, Yamani, Ovinga, Mina, Gisely, Thomaz and…
ELASTICITY OF LIFE
This is the title of the book recently published, in French and…
Understanding mothers’ experiences through narrative analysis
A study was recently published in « Qualitative Health Research ».…
Distribution of CL according to Types and Countries
Our census of Cutis Laxa patients allows today to establish
its…
its…
Survey ALL
Carried out between January and April 2023, together with EMMA…
KAPCODE Study
Marie-Claude Boiteux took part in writing a new scientific publication :…
VDS (Visible Disorders of the Skin) Program
This program has been set up by the “Patient Relationship”…
Another booklet recently published
This is for schools and communities to welcome a child with a…
Skin Disability Guides
After two years of collaborative work with patients, medical…
Social Media Listening
An article has just been published in JEADV :
Patients' testimonies,…
Patients' testimonies,…
“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…