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-Claude
cmgg-Pr Bert CALLEWAERT

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-Claude

In our hearts and thoughts

Alas, we are very sad to let you know about two deaths:
Lucille,…
December 28, 2024/by Marie-Claude

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-Claude

6th Conference of the French Federation for Skin (FFP)

03rd December 2024
6th Conference of the French Federation for…
December 8, 2024/by Marie-Claude

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-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-Claude

European Elastin Meeting

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

ERN-Skin Board Meeting

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

“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-Claude
Welcome

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-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