CUTIS LAXA : News

All 21 /In the media 12 /Legislation - Society 4 /Meetings, Events and Exhibitions 2 /Mutations 0 /New contacts, new families 2 /News 0 /Photos 1 /Research 0 /Research - Medicine - Genetics 12 /Uncategorized 0 /upcoming events 0 /Video 3

20 YEARS AGO ……

Cécile was diagnosed in 1992.

8 years later, she appeared…
December 22, 2020/by Marie-Claude

Living with …. Cutis Laxa

The French monthly magazine "La Revue du Praticien" (The Medical…
December 15, 2020/by Marie-Claude

CUTIS LAXA PATIENT JOURNEYS

We have developped 2 patient journeys based on testimonies from…
November 24, 2020/by Marie-Claude

6th CUTIS LAXA DAYS

SAVE THE DATES
The 6th Cutis Laxa  Days will be held at the…
November 19, 2020/by Marie-Claude

Watch Cecile’s interview

November 10, 2020/by Marie-Claude

WHAT IS AN ERN (European Reference Network) ? (Videos)

Set up 3 years ago by the European Commission, they aim to help…
November 2, 2020/by Marie-Claude

Acquired Cutis Laxa associated with monoclonal gammapathy or multiple myeloma

A possible improvment of the symptoms in Acquired Cutis Laxa…
October 15, 2020/by Marie-Claude
cmgg-Pr Bert CALLEWAERT

RESEARCH ON ACQUIRED CUTIS LAXA

A scientific study on Acquired Cutis Laxa (ACL) is led by
Pr…
October 15, 2020/by Marie-Claude

CLI VIDEO ON YOUTUBE

The French Skin Federation (FFP) has launched videos (in French)…
September 29, 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

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

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

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