CUTIS LAXA : News

All 19 /In the media 12 /Legislation - Society 3 /Meetings, Events and Exhibitions 0 /Mutations 0 /New contacts, new families 1 /News 0 /Photos 0 /Research 0 /Research - Medicine - Genetics 6 /Uncategorized 0 /upcoming events 0 /Video 1

Patients’ and associations’ role is poorly recognised

The COVID crisis reveals how patients’ and associations’…
July 30, 2020/by Marie-Claude

ERN-SKIN TRAINING SESSION IN GHENT (Belgium)

16th December : ERN-Skin, training session in Ghent (Belgium).
Organised…
June 1, 2020/by Marie-Claude

Dawn Laney, a RARE Hero

In its issue N°15, April 2020, Rare Revolution Magazine, talks…
April 11, 2020/by Marie-Claude

David Ross, a RARE revolutionary

In its issue N°15, april 2020, Rare Revolution Magazine publishes…
April 10, 2020/by Marie-Claude
Welcome

New Contacts, Families’ News

A warm welcome to the CL patients who joined us in 2019 :

Lilah,…
February 27, 2020/by Marie-Claude

FIMARAD VIDEOS

YOUTUBE CHANNEL FOR RARE DERMATOLOGIC DISEASES
 

The…
February 15, 2020/by Marie-Claude

Dill Extract Induces Elastic Fiber Neosynthesis

Dill Extract Induces Elastic Fiber Neosynthesis and Functional…
January 23, 2020/by Marie-Claude

ZEYNEP’S STORY

Video on SHOW TV, on facebook, about Zeynep diagnosed with Cutis…
December 10, 2019/by Marie-Claude

MOHAMMED IN AUSTRIA

WHO HELPS MOHAMMED ?
Same article (in Dutch) in the newspapers
"De…
December 1, 2019/by Marie-Claude

Cécile suffers from a rare genetic disorder

CAFFE.ch, swiss online magazine (in Italian)
2019.05.05


Read…
May 5, 2019/by Marie-Claude

I AM 28, BUT MY SKIN LOOKS LIKE 65

L'illustré, swiss newspaper (in French)

2019.02.06


Watch…
February 6, 2019/by Marie-Claude

ARTERYLASTIC : First real therapeutic hope

ARTERYLASTIC : First real therapeutic hope for vascular issue…
January 21, 2019/by Marie-Claude

Helplines for Rare Disorders worldwide

Helplines for rare disorders worldwide



Country
Organisation     
Helpline…
January 15, 2019/by Marie-Claude

“He is a real scamp”

12th January 2018 :

Article in Voralberg' newspaper (Germany)…
January 12, 2019/by Marie-Claude

Mohammed’s new life in Germany

28 Décembre 2018 :

Mohammed’s new life in Germany (Mohammed…
December 28, 2018/by Marie-Claude

Chiara, RAI2 (Italian television), broadcast DettoFatto

16th November 2018 :

RAI2 (Italian television), broadcast…
November 16, 2018/by Marie-Claude

« Marie-Claude Boiteux, a volunteer mother fighting for her daughter suffering from an orphan disorder »

Le Dauphiné Libéré 2018.02.07
June 30, 2018/by Marie-Claude

A New Type of Cutis Laxa

In March, the American Journal of Medecine Genetics published…
March 31, 2018/by Marie-Claude

New mutations (ATP6V1E1, ATP6V1A)

ATP6V1E1 or ATP6V1A, are the new mutations recently published…
July 1, 2017/by sonja