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.
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, who was responsible for relationship with patients for orphan disorders at that time, heard our call. She tells here (in French) what happened 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
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)
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)
Here is how you can get subtittles in your own language :
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.
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
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)
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
The COVID crisis reveals how patients’ and associations’ role is poorly recognised (Newspaper Le Monde 2020.07.06)
In this newspaper article, three members of the French association Renaloo (kidney failure) make an unanimous statement : Associations of Health Users were forgotten in the heart of the sanitary crisis :
Nothing should be done without Us !