Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne, Richelle and 4 members of her family, James and Charles, Ehran, Lisa, Emam are new members of the big Cutis Laxa family.
We are now 466 patients and their families, coming from all parts of the world. We are united and we get our voices heard. We support each other. And as the Rare Disease Day motto declares: « We are RARE, we are STRONG, we are PROUD
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
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
Caetano, Tamapa, Defne, Tami,Yusuf, Tracey, William, Atay Robin, Sunusi, Hanna, Umar, Jo, Sarah, Talita, Randi, Carol, Eli, Gina, Sonia, Maria, James, Ayyaz, Mariya and Oluhle have joined us since the beginning of 2020.
Koweit, Dubai, Sierra Leone, Nigeria and South Africa are the additional colors on our map of world..
We now gather together 440 patients worldwide. Of them, 18,6 % have a Dominant type (ADCL) , 17,1 % a Recessive type (ARCL), 22 % an Acquired one and 40% do not know, or not yet, their exact type. The other types (MACS, OHS, GO,…) represent 2,3% of the total.
A warm welcome to the CL patients who joined us in 2019 :
Lilah, Angie, Nathan, Jessie, Cassius, Akim, Felicity, Kofi, Kollin, Grace, Ashley & Janet, in the U.S.A,
Fernanda in Brazil,
Olive in Australia
Qamar in Egypt,
Moctar’s son, the first patient we know of in Senegal.
River, Meagan & her mother, in Canada
Tina, Rhian in Great-Britain
Zeynep in Turkey
Anaaya in India
Welcome to all of you. We now are 413 patients worldwide that are not alone