CUTIS LAXA : News

SPORTSMEN AND SPORTSWOMEN SUPPORT US
2025 will be a great year !
We are supported by big sports events
8th-10th…
February 8, 2025/by Marie-ClaudeWe are supported by big sports events
8th-10th…

Astrazeneca awarded its « Scientific Prize 2024 » to Pr Bert Callewaert .
On 12th December 2024, Astrazeneca awarded its « Scientific…
January 2, 2025/by Marie-Claude
Thesis on cases of Cutis Laxa
Dr Thatjana Gardeitchik was a successful candidate with her thesis…
December 30, 2024/by Marie-Claude
In the Media
02nd September 2024
Info-Chalon (newspaper) Official opening…
December 29, 2024/by Marie-ClaudeInfo-Chalon (newspaper) Official opening…

In our hearts and thoughts
Alas, we are very sad to let you know about two deaths:
Lucille,…
December 28, 2024/by Marie-ClaudeLucille,…

Online Activities
According to the rythm established in 2024, attending numerous…
December 20, 2024/by Marie-Claude
Dermatology Days of Paris
03rd-06th December 2024
Dermatology Days of Paris (JDP)
Thanks…
December 8, 2024/by Marie-ClaudeDermatology Days of Paris (JDP)
Thanks…

6th Conference of the French Federation for Skin (FFP)
03rd December 2024
6th Conference of the French Federation for…
December 8, 2024/by Marie-Claude6th Conference of the French Federation for…

La Sorbonne University of the Patients
Marie-Claude Boiteux was interviewed for the videos used during…
December 1, 2024/by Marie-Claude
Patient Forum
26th November 2024
Pfizer Patient Forum
Marie-Claude…
November 30, 2024/by Marie-ClaudePfizer Patient Forum
Marie-Claude…

THANK YOU
A huge THANK YOU to the leading team of the sport events organised…
November 27, 2024/by Marie-Claude
FIMARAD Annual Meeting
08th November 2024
FIMARAD Annual Meeting
Patient organisation…
November 15, 2024/by Marie-ClaudeFIMARAD Annual Meeting
Patient organisation…

European Elastin Meeting
28th-31st October 2024
European Elastin Meeting (EEM 2024) in…
November 5, 2024/by Marie-ClaudeEuropean Elastin Meeting (EEM 2024) in…

ERN-Skin Board Meeting
24th-25th October 2024
ERN-Skin Board Meeting at “Institut…
October 30, 2024/by Marie-ClaudeERN-Skin Board Meeting at “Institut…

“Exp’Ose Ta Peau” (dare to show your skin)
16th -17th Septembre 2024 the event “Exp’Ose Ta Peau” (dare…
September 20, 2024/by Marie-Claude
Cutis Laxa : What’s new
Cutis Laxa update
During the World Congress in Paris in June…
September 18, 2024/by Marie-ClaudeDuring the World Congress in Paris in June…

New Contacts, Families’ News
Daniella, Lucie, Sara, Jamila, Shelley, MDMBen, Mirxan, Maya…
September 10, 2024/by Marie-Claude
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…