CUTIS LAXA : News

World Health Assembly (WHA) Resolution on Rare Diseases
On 30th August 2024, Rare Diseases International (RDI), the Arab…
September 6, 2024/by Marie-Claude
Infographics
5 % of the global population are suffering from a rare disorder
Equity…
August 10, 2024/by Marie-ClaudeEquity…

CONECT PROJECT
After two years of hard work, the CONECT project (Cardio-Ocular…
July 31, 2024/by Marie-Claude
On-line Activities
These are extremely numerous so it is difficult to give all details…
June 30, 2024/by Marie-Claude
World Congress on Rare Skin Diseases
The most important event for rare skin disorders was held in…
June 30, 2024/by Marie-Claude
Interview with Pr.Bert Callewaert
All you need to know about Cutis Laxa, all your questions are…
June 9, 2024/by Marie-Claude
Bringing Skin Patients’ voice to WHO
In Geneva,
taking the opportunity of the World Health Assembly,
on…
May 31, 2024/by Marie-Claudetaking the opportunity of the World Health Assembly,
on…

European Disability Card
Members of the European Parliament approved the provisional…
May 23, 2024/by Marie-Claude
Scotland publishes first Genomic Medicine Strategy
The 2024-2029 plan intends to create a more coordinated genomic…
May 23, 2024/by Marie-Claude
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…
May 23, 2024/by Marie-Claude
IN THE MEDIA
06th March 2024 Le Monde (French Newspaper)
Rare Disorders -…
May 6, 2024/by Marie-ClaudeRare Disorders -…

NOT JUST MY SKIN
The World Skin Health Coalition (WSHC) ended its campaign «…
April 19, 2024/by Marie-Claude
Sweden launches its first national strategy on Rare Disorders
The National Council for Health and Well-Being (CNSB) identifies…
March 18, 2024/by Marie-Claude
Canada takes steps towards improving rare disease care.
The network RareKids-CAN and the Canadian Network for Rare Disorders…
March 18, 2024/by Marie-Claude
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