CUTIS LAXA : News
Cutis Laxa Videos …… N°5
Today's topic is our organisation "Cutis Laxa Internationale"…
Cutis Laxa Videos …… N°4
Today I talk about the impact of the disorder in adulthood: love…
Cutis Laxa Videos …….. N°3
Here is the third episode of our videos.
A painful and emotional…
A painful and emotional…
Cutis Laxa Videos….. N°2
Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude…
Marie-Claude…
Cécile talks about Cutis Laxa
Here is a new video that has just been posted on social media.
Cécile…
Cécile…
Cutis Laxa Videos…… N°1
Here is the first of 8 videos edited by EwenLife on their Youtube…
They talk about us !!
EwenLife is dedicated to rare disorders. They made an interview…
CUTIS LAXA WHITE BOOK
Since Cutis Laxa Internationale was set up, we have received…
The French Federation for Skin published its plea
The French Federation for skin is publishing its plea aiming…
Painting contest
1st prize in the 14-18 age range.
The drawing competititon…
The drawing competititon…
Living with a Rare Disorder in France
Orphanet has just edited its new study about rare disorders in…
Globalskin (International Organisation for Skin Disorders) held two events early this year
On 25th February : Webinar : « The Power of the Patient Community…
Rare 2030 conference update
On 23rd February : The European Commissioner for Health and…
RARE 2030
On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis…
New Members, News from the Families
Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne,…
Rare Disease International (RDI) Activities
Rare Disease International (RDI) organised several events in…
“Hacking Health” Challenge in Lyon (France)
During three days (14th, 15th and 16th January 2021) we took…
Vaccination advices
A vaccination campaign against SARS-CoV-2 (COVID-19) infection…
20 YEARS AGO ……
Cécile was diagnosed in 1992.
8 years later, she appeared…
8 years later, she appeared…
Living with …. Cutis Laxa
The French monthly magazine "La Revue du Praticien" (The Medical…
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…
e-Book edited by the French Federation for Skin (FFP)
FFP has just issues its first e-book on :
"Cutaneous disorders…
"Cutaneous disorders…
Paris Dermatologic Days (JDP)
We were able to attend the JDP online, so as to be visible despite…
Annual Meeting and 2nd Conference of the French Federation for Skin
On 1st December 2020 we attended online the Annual Meeting and…
Annual Day of the French Network for Rare Skin Disorders
27th November 2020 : The Annual FIMARAD meeting (French Health…
CUTIS LAXA PATIENT JOURNEYS
We have developped 2 patient journeys based on testimonies from…
6th CUTIS LAXA DAYS
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the…
The 6th Cutis Laxa Days will be held at the…
Watch Cecile’s interview
All EPAGS ANNUAL MEETING
5th andt 6th November 2020 : Patient Representatives (ePAG) gathered…
1st Congress of the French Alliance for Rare Disorders
3rd November 2020 : The first Congress organised by the French…
WHAT IS AN ERN (European Reference Network) ? (Videos)
Set up 3 years ago by the European Commission, they aim to help…
RARE SKIN DISORDERS AND COVID-19 : An observationnal study
RARE SKIN DISORDERS AND COVID-19
An observational study was…
An observational study was…
Acquired Cutis Laxa associated with monoclonal gammapathy or multiple myeloma
A possible improvment of the symptoms in Acquired Cutis Laxa…