20 YEARS AGO ……
/in In the media, Meetings, Events and Exhibitions, New contacts, new families, News /by Marie-ClaudeCécile 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
6th CUTIS LAXA DAYS
/in In the media, Legislation - Society, Meetings, Events and Exhibitions, New contacts, new families, News, Photos, Research, Research - Medicine - Genetics, upcoming events /by Marie-ClaudeSAVE THE DATES
The 6th Cutis Laxa Days will be held at the University Hospital of Ghent( Belgium)
on 14th, 15th and 16th September 2022