Cutis Laxa Videos….. N°2
Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude Boiteux talks about “difference and psychological impact”
and here is how you can get subtittles in your own language
see you next week for episode N°3
Cécile talks about Cutis Laxa
Here is a new video that has just been posted on social media.
Cécile talks about what it is like to live with Cutis Laxa.
https://www.facebook.com/letribunaldunet/videos/1782251148618795
We are sorry it is only in French.
Cutis Laxa Videos…… N°1
Here is the first of 8 videos edited by EwenLife on their Youtube Channel
Marie-Claude Boiteux explains what Cutis Laxa is and the different types.
It is in French, but here is how you can get subtittles in your own language
They talk about us !!
EwenLife is dedicated to rare disorders. They made an interview with Marie-Claude Boiteux to publish videos talking about Cutis Laxa: what it is, the diagnosis, treatments, Cutis Laxa Internationale, etc
Once a week, on sunday, they will edit one video. And there are 8 videos. We are sorry there was no funds to get them subtittled in English we hope you can understand French.
Here is the teaser announcing the videos on their facebook page
They also talked about Cutis Laxa on their facebook page
Here is their Youtube channel where the videos are posted.
ENJOY watching them !
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.
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, 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
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)
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
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)