CUTIS LAXA : News

Cutis Laxa : What’s new

Cutis Laxa update
During the World Congress in Paris in June…
September 18, 2024/by Marie-Claude
Welcome

New Contacts, Families’ News

Daniella, Lucie, Sara, Jamila, Shelley, MDMBen, Mirxan, Maya…
September 10, 2024/by Marie-Claude

Infographics

 5 % of the global population are suffering from a rare disorder

Equity…
August 10, 2024/by Marie-Claude

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-Claude

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-Claude

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-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

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-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