20 YEARS AGO ……

Cécile was diagnosed in 1992.

8 years later, she appeared for the first time on TV screens.

On 11th November 2001 we set up Cutis Laxa Internationale. But there was no research programm. We knew of 9 patients.

One month later,  we appealled on TV screens during the Telethon (Fudraising event). We needed a 10th patient for a research programm to be launched.

Annie Moissin, wha was responsible for relationship with patients for orphan disorders at that time, heard our call. She tells here (in French) what happenend next.

Thanks to you Annie,

Thanks to Solhand of which you are now the Chair.,

One can do nothing alone, Together we are stronger, we go further.

Marie-Claude Boiteux

Chair of Cutis Laxa Internationale,  Cécile’s mother

Living with …. Cutis Laxa

The French monthly magazine “La Revue du Praticien” (The Medical Practitioner’s Journal) published an article on Cutis Laxa in its November issue.

 

Read the article here (in French)

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 (Network for Rare Cutaneous Disorders), Marie-Claude Boiteux presented the ePAGs’ work for Patients in ERN-Skin (in French at 9:57)

e-Book edited by the French Federation for Skin (FFP)

FFP has just issues its first e-book on :

“Cutaneous disorders and psychology”

The French Federation for Skin helps you and shares a few pages on patients’ psychological situation as well as advice and analysis from our psychologists. It aims to give some points to help live a better daily life with the disorder.

Read (pdf in French)

6th CUTIS LAXA DAYS

SAVE THE DATES

The 6th Cutis Laxa  Days will be held at the University Hospital of Ghent( Belgium)

on 14th, 15th and 16th September 2022

 

FUNDRAISING PAGE

Help us raise enough funds to organise the next Cutis Laxa Days.

Go to our secured fundraising page, thank you

https://www.leetchi.com/c/cutislaxainternational?fbclid=IwAR0HRdStl2FoSBi3_sH5ckcMf7Rw-CJuZYhoOP2ZZb8dI8cjJG6IjVZh0Hc

Watch Cecile’s interview

WHAT IS AN ERN (European Reference Network) ? (Videos)

Set up 3 years ago by the European Commission, they aim to help patients with rare disorders receive a right diagnosis and follow-up, gather together all European experts and Patients Organisations to allow patients to get the best care.

The European Commission, Patients and ERN Coordinators give their point of view

European Commission (in almost all European Languages)

https://audiovisual.ec.europa.eu/en/video/I-193046

Patients (in English and/or with English subtitles)

https://audiovisual.ec.europa.eu/en/video/I-191813

ERN Coordinators (in English and/or with English subtitles)

https://audiovisual.ec.europa.eu/en/video/I-191812

CLI VIDEO ON YOUTUBE

The French Skin Federation (FFP) has launched videos (in French) from its member organisations on youtube.

Listen to Marie-Claude Boiteux talking about Cutis Laxa Internationale

 

CUTIS LAXA WHITE BOOK

Since  Cutis Laxa Internationale was set up, we have received many patients’ and parents’ testimonies.

They are now collected in a newly published book :

« Cutis Laxa, Story of a Rare Disorder, Patients’ testimonies ».

It is available in French, English and Spanish. We will send it to you on request, at €25 per copy.