CUTIS LAXA : News

Cutis Laxa Videos …… N°5
Today's topic is our organisation "Cutis Laxa Internationale"…
May 3, 2021/by Marie-Claude
Cutis Laxa Videos …… N°4
Today I talk about the impact of the disorder in adulthood: love…
April 26, 2021/by Marie-Claude
Cutis Laxa Videos …….. N°3
Here is the third episode of our videos.
A painful and emotional…
April 19, 2021/by Marie-ClaudeA painful and emotional…

Cutis Laxa Videos….. N°2
Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude…
April 12, 2021/by Marie-ClaudeMarie-Claude…

Cécile talks about Cutis Laxa
Here is a new video that has just been posted on social media.
Cécile…
April 8, 2021/by Marie-ClaudeCécile…

Cutis Laxa Videos…… N°1
Here is the first of 8 videos edited by EwenLife on their Youtube…
April 7, 2021/by Marie-Claude
They talk about us !!
EwenLife is dedicated to rare disorders. They made an interview…
April 7, 2021/by Marie-Claude
CUTIS LAXA WHITE BOOK
Since Cutis Laxa Internationale was set up, we have received…
March 31, 2021/by Marie-Claude
The French Federation for Skin published its plea
The French Federation for skin is publishing its plea aiming…
March 17, 2021/by Marie-Claude
Painting contest
1st prize in the 14-18 age range.
The drawing competititon…
March 15, 2021/by Marie-ClaudeThe drawing competititon…

Living with a Rare Disorder in France
Orphanet has just edited its new study about rare disorders in…
March 10, 2021/by Marie-Claude
Globalskin (International Organisation for Skin Disorders) held two events early this year
On 25th February : Webinar : « The Power of the Patient Community…
March 4, 2021/by Marie-Claude
Rare 2030 conference update
On 23rd February : The European Commissioner for Health and…
February 25, 2021/by Marie-Claude
RARE 2030
On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis…
February 23, 2021/by Marie-Claude
New Members, News from the Families
Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne,…
February 15, 2021/by Marie-Claude
Rare Disease International (RDI) Activities
Rare Disease International (RDI) organised several events in…
February 4, 2021/by Marie-Claude
“Hacking Health” Challenge in Lyon (France)
During three days (14th, 15th and 16th January 2021) we took…
January 20, 2021/by Marie-Claude
Vaccination advices
A vaccination campaign against SARS-CoV-2 (COVID-19) infection…
January 11, 2021/by Marie-Claude
20 YEARS AGO ……
Cécile was diagnosed in 1992.
8 years later, she appeared…
December 22, 2020/by Marie-Claude8 years later, she appeared…

Living with …. Cutis Laxa
The French monthly magazine "La Revue du Praticien" (The Medical…
December 15, 2020/by Marie-Claude
Patients Representatives’ (EPAGs) work in 2019-2020 in the European Reference Network-Skin (ERN-Skin)
During the 5th annual meeting of the French Health Network FIMARAD…
December 9, 2020/by Marie-Claude
e-Book edited by the French Federation for Skin (FFP)
FFP has just issues its first e-book on :
"Cutaneous disorders…
December 8, 2020/by Marie-Claude"Cutaneous disorders…

Paris Dermatologic Days (JDP)
We were able to attend the JDP online, so as to be visible despite…
December 2, 2020/by Marie-Claude
Annual Meeting and 2nd Conference of the French Federation for Skin
On 1st December 2020 we attended online the Annual Meeting and…
December 1, 2020/by Marie-Claude
Annual Day of the French Network for Rare Skin Disorders
27th November 2020 : The Annual FIMARAD meeting (French Health…
November 27, 2020/by Marie-Claude
CUTIS LAXA PATIENT JOURNEYS
We have developped 2 patient journeys based on testimonies from…
November 24, 2020/by Marie-Claude
6th CUTIS LAXA DAYS
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the…
November 19, 2020/by Marie-ClaudeThe 6th Cutis Laxa Days will be held at the…

Watch Cecile’s interview
November 10, 2020/by Marie-Claude
All EPAGS ANNUAL MEETING
5th andt 6th November 2020 : Patient Representatives (ePAG) gathered…
November 5, 2020/by Marie-Claude
1st Congress of the French Alliance for Rare Disorders
3rd November 2020 : The first Congress organised by the French…
November 3, 2020/by Marie-Claude
WHAT IS AN ERN (European Reference Network) ? (Videos)
Set up 3 years ago by the European Commission, they aim to help…
November 2, 2020/by Marie-Claude
RARE SKIN DISORDERS AND COVID-19 : An observationnal study
RARE SKIN DISORDERS AND COVID-19
An observational study was…
October 30, 2020/by Marie-ClaudeAn observational study was…

Acquired Cutis Laxa associated with monoclonal gammapathy or multiple myeloma
A possible improvment of the symptoms in Acquired Cutis Laxa…
October 15, 2020/by Marie-Claude