Welcome

Our « Big Cutis Laxa Family » grows day after day.

Its new members : Joanna, Ayse and her two brothers, Delphine, Elizabeth, Adar, Aakshay, Fabricio, Solange, Andrea, Zahid, Dilsa, Jannae & Julia, Fatiha and her sister, MaryAnn come from Poland, Turkey, Canada, Saoudy Arabia , USA, Israel, Brazil, Italy, Colombia, France.

All around the world, 479 patients are now part of our Cutis Laxa patients’ community.

 

On 27th May I heard with deep sorrow about Maddie’s passing. She was  19 months old. I had talked a lot with her mother during her long stay in hospital. Rest in peace sweet angel, your pain has disappeared.

Welcome

New Members, News from the Families

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

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

 

Welcome

NEW MEMBERS, NEW FAMILIES

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.

Welcome

New Contacts, Families’ News

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

GOOD-BYE JONNY

On 20th September 2004 I received a letter from Sweden. This was my first contact with Jonny. He was 55 at the time. He had been diagnosed with CL a few months after his birth. Since early childhood, lung issues linked to Cutis Laxa were a constant worry. But it did not prevent him from getting married and having a son.

Working as psychiatric nurse, and also musician, he was a very caring man.

In 2016 he attended the 5th Cutis Laxa Days in Annecy (France). His presence was a real gift to us all. The testimony of his life journey is a memory we cherish in our hearts.

 

Exhausted by respiratory and cardio-vascular difficulties, Jonny left this world on 11 December 2019.

We lost a friend but also one of the oldest members of Cutis Laxa Internationale.

We send our loving thoughts to his wife and son.

Marie-Claude Boiteux, Chair

Welcome

NEW CONTACTS, FAMILIES’ NEWS

Since last July, Mina (Irak), Aimee (USA), Gül (Turquie), Rhett (USA), Benjamin (USA), Linda (USA), Graça Maria (Brésil), Raghad (Syrie/Turquie), Françoise (France), Mara (Roumanie), Heather (USA) and Daniel (Italy) joined us.

That is now 385 patients spread over 59 countries across 5 continents, suffering from Cutis Laxa and members of Cutis Laxa Internationale.

Welcome to all of you, to our big Cutis Laxa Family.

Once again we send our deepest sympathy to the family of Naomi, 4, gone too soon….……