CUTIS LAXA : News
Cardiovascular problems in Cutis Laxa
Dr Ilse MEERSCHAUT
According to a study of 469 patients with…
According to a study of 469 patients with…
Acquired Cutis Laxa
Pr. Bert CALLEWAERT
This type of Cutis Laxa still remains…
This type of Cutis Laxa still remains…
New classification of Cutis Laxa types
Dr A.Beyens presented the long piece of work that analized the…
They left this world
We are so sad, our Big Cutis Laxa Family has just lost two of…
New Patients, New Families
Sara and her sister Abeer, Bennett, Tucker, Eileen, Youssef,…
Transmission and testing during pregnancy in case of a genetic disorder
Dr Candy KUMPS et Dr Sofie SYMOENS
For all young people with…
For all young people with…
Physiotherapy and Cutis Laxa
Dr Inge DEWANDELE
Our joints allow our body to move: waking,…
Our joints allow our body to move: waking,…
Ophtalmologic issues in Cutis Laxa
Dr Lana HOEBEKE
Elastic Fibers are present in almost all parts…
Elastic Fibers are present in almost all parts…
Study about Teleexpertise in dermatology in a French region
TeleExpertise in dermatology
Marie-Claude Boiteux led a study …
Marie-Claude Boiteux led a study …
Tropoelastin deposition to treat elastic fiber diseases ?
Dr Romain DEBRET
25 years ago, when we founded Cutis Laxa…
25 years ago, when we founded Cutis Laxa…
MAPPING RARE
28th February
On the occasion of Rare Disease Day 2026, Rare…
On the occasion of Rare Disease Day 2026, Rare…
CUTIS LAXA PATIENT JOURNEYS
NEW PATIENT JOURNEYS
We have developed 2 patient journeys based…
We have developed 2 patient journeys based…
Poem for a woman diagnosed with Cutis Laxa
She had been told that it would be difficult
She had been…
She had been…
25 Years ago……
A flagship show of the 1990s and 2000s, "Ça se discute" (“It’s…
ERN-Skin Board Meeting
11th-12th December
Members of ERN-Skin got together for…
Members of ERN-Skin got together for…
And in the Media…..
8th October :
Doctissimo press release :
« Skin Diseases -…
Doctissimo press release :
« Skin Diseases -…
Dermatology Days of Paris
2nd December
The 7th Conference of the French Federation for…
The 7th Conference of the French Federation for…
Triathlon de Sireuil
On 21st November 2025,
the town of Sireuil handed a €2,000…
the town of Sireuil handed a €2,000…
The role of ERNs in boosting EU competitiveness through public-private partnerships
Together for Rare Diseases (Together4RD) has published a report…
GLISSE EN COEUR
19th November:
We had the great luck and honor to be selected…
We had the great luck and honor to be selected…
St Martin’s Fair
16th Novembre :
The traditional St Martin’s Fair…
The traditional St Martin’s Fair…
Three new national plans for rare diseases in the world :
They all are in line with the recent adoption of the World Health…
Can cognitive behavioural group therapy help people living with a rare disease?
People living with a rare disease (PLWRD) often experience significant…
FIMARAD Annual Meeting
3rd October :
The annual meeting of FIMARAD (French Network…
The annual meeting of FIMARAD (French Network…
Globalskin Europe and EADV in Paris
16th September : GLOBALSKIN
Globalskin Europe members met…
Globalskin Europe members met…
Another Day in Bergame
13th September
We traveled back to Bergame for an evening…
We traveled back to Bergame for an evening…
New members
Rebecca, Sami, Robert, Anna, Zoé, Mercédes, Sarah, Emily, Elena,…
In the Media
11th March :
Local radio "Jordanne FM" interview with Philippe…
Local radio "Jordanne FM" interview with Philippe…
They left this world
Alas ! more deaths plunged us in mourning:
Nathan, Maui, Tony…
Nathan, Maui, Tony…
Pregnancy and Family Planning in Rare Disorders
Orphanet Journal of Rare Diseases published the results of…
ERN-Skin Activities
16th January 2025 : Executive Committee (on line)
This annual…
This annual…
Disabilities and Barriers in rare skin disorder
Recognising Disabilities and Barriers in rare skin disorder :…
Sports Events in Charente …. and other (France)
1st MAY in DOUZAT
The Festival Committee and the association…
The Festival Committee and the association…