CUTIS LAXA : News
NEW MUTATIONS
Even if I cannot tell you more since publications have not yet…
Our « Big Cutis Laxa Family » grows day after day.
Its new members : Joanna, Ayse and her two brothers, Delphine,…
In the Media
They talk about Cutis Laxa :
On 16th March, Chiara’s testimony…
On 16th March, Chiara’s testimony…
The French Federation for SKIN (FFP) is working hard
Since the beginning of the year, Georges Martinho, FFP General…
ERN-Skin Activities
19th February : First ERN-Skin Scientific Day
114 doctors and…
114 doctors and…
workgroups, training and information for Patient Representatives (ePAGS
On 18th March
« Good Practice : How to measure results, What…
« Good Practice : How to measure results, What…
The first half of the year was quite busy with Eurordis
On 12th May : Annual Members meeting
on 10th June : Annual…
on 10th June : Annual…
Cutis Laxa Videos ……… N°8 ……. last one
Here is the 8th .....and last.....of our videos
"Advice and…
"Advice and…
Cutis Laxa Videos …… N°7
Treatments and surgeries are the topics of our 7th video about…
Patients’ inequalities of treatment
Patients’ inequalities of treatment
(Opinion piece published…
(Opinion piece published…
Cutis Laxa Videos …. N°6
Let's watch the 6th episode of our videos about Cutis Laxa.
Today…
Today…
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…