CUTIS LAXA : News

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

RARE SKIN DISORDERS AND COVID-19 : An observationnal study

RARE SKIN DISORDERS AND COVID-19
An observational study was…
October 30, 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

ERN-Skin Annual Board Meeting 2020

2nd October 2020 : ERN-Skin annual Board Meeting was a great…
October 2, 2020/by Marie-Claude

ERN-Skin Board Meeting

On 2nd october 2020, ERN-Skin held its annual Board meeting,…
October 2, 2020/by Marie-Claude
Welcome

NEW MEMBERS, NEW FAMILIES

Caetano, Tamapa, Defne, Tami,Yusuf, Tracey, William, Atay Robin,…
September 30, 2020/by Marie-Claude

CLI VIDEO ON YOUTUBE

The French Skin Federation (FFP) has launched videos (in French)…
September 29, 2020/by Marie-Claude

“SUMMER MUSIC” IN FANTASIA PARK

7th August : After several months in lockdown, it was a real…
August 7, 2020/by Marie-Claude

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

RARE DISEASES INTERNATIONAL (RDI) ANNUAL GLOBAL MEETING

Rare Disease International (RDI) Annual Meeting and Conference,…
May 19, 2020/by Marie-Claude

EUROPEAN CONFERENCE ON RARE DISORDERS

European Conference on Rare Disorders (ECRD) on 14th and 15th…
May 15, 2020/by Marie-Claude

EURORDIS ANNUAL GENERAL MEETING

Of course, during lockdown, many events and meetings have been…
May 13, 2020/by Marie-Claude

SKIN RARE DISORDERS AND COVID-19

ERN-Skin and Covid 19_virus 07 04 2020
April 23, 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

COVID-19 PANDEMIA

PATIENTS WITH RARE CUTANEOUS DISORDERS ASSOCIATED WITH  RECOGNISED…
March 21, 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

Does “Gaston Lagaff”, cartoon character, have Ehlers-Danlos Syndrom ?

Humorous, but very serious
Pr Mickaël Dinomais, Professor in…
February 27, 2020/by Marie-Claude

FIMARAD VIDEOS

YOUTUBE CHANNEL FOR RARE DERMATOLOGIC DISEASES
 

The…
February 15, 2020/by Marie-Claude

THE GOSPEL CHOIR SINGS FOR CLI

Shortly before lockdown, the Gospel choir had organized a masterclass…
February 9, 2020/by Marie-Claude

Dill Extract Induces Elastic Fiber Neosynthesis

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

THE PATIENT JOURNEY

THE PATIENT JOURNEY
(European Journal of Human Genetics : “…
January 10, 2020/by Marie-Claude

GOOD-BYE JONNY

On 20th September 2004 I received a letter from Sweden. This…
December 11, 2019/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

LEADERSHIP SCHOOL IN BARCELONA

26 - 27th November  Leadership School organised by Eurordis.

After…
November 28, 2019/by Marie-Claude

ERN-Skin Board Meeting 2019

ERN-Skin Board Meeting in Necker Hospital in Paris.
Two days…
October 4, 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

Rare dermatologic diseases are neglected in drug development

Rare dermatologic diseases are neglected in drug development…
April 12, 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