Welcome

New Patients

Cutis Laxa Internationale now gathers 517 patients coming from all parts of the world:

Stacy, Amber, Ayse, Celia, Deacon, Emmy, Scott, Anna, Em, Amelie, Patricia, Yousef, Nora Grace, Warisha and Nicole joined us since our last newsletter.

Our Big Cutis Laxa Family is glad to welcome them and give them all the help and support they need.

 

Very sadly I need to let you know that two of our members passed away : Anaaya, 3 ½ , in India and  Dominique, 51, in France. Again, we send our deepest condolences to their families. May they Rest in Peace.

GOOD-BYE

Time to go home….. It is so hard to leave each other.

Longing to meet again ……. Roll on the 7th Days …

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

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