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….……

Welcome

We are happy to welcome the brand new members :

Laurie and Zachary, Charlotte, Addison, Andrei, Alexandra, Juan Camillo, Vihu, Junot Neto, David, Isabelle, Olliwier, Rhoda as well as Zara’s brother and sister,

A warm welcome to all of you in our big family.

355 patients spread over 55 countries across 5 continents, is the number of people suffering from Cutis Laxa who joined Cutis Laxa Internationale as of today.

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