CUTIS LAXA : News
WHAT IS AN ERN (European Reference Network) ? (Videos)
Set up 3 years ago by the European Commission, they aim to help…
RARE SKIN DISORDERS AND COVID-19 : An observationnal study
RARE SKIN DISORDERS AND COVID-19
An observational study was…
An observational study was…
Acquired Cutis Laxa associated with monoclonal gammapathy or multiple myeloma
A possible improvment of the symptoms in Acquired Cutis Laxa…
RESEARCH ON ACQUIRED CUTIS LAXA
A scientific study on Acquired Cutis Laxa (ACL) is led by
Pr…
Pr…
ERN-Skin Annual Board Meeting 2020
2nd October 2020 : ERN-Skin annual Board Meeting was a great…
ERN-Skin Board Meeting
On 2nd october 2020, ERN-Skin held its annual Board meeting,…
NEW MEMBERS, NEW FAMILIES
Caetano, Tamapa, Defne, Tami,Yusuf, Tracey, William, Atay Robin,…
CLI VIDEO ON YOUTUBE
The French Skin Federation (FFP) has launched videos (in French)…
“SUMMER MUSIC” IN FANTASIA PARK
7th August : After several months in lockdown, it was a real…
Patients’ and associations’ role is poorly recognised
The COVID crisis reveals how patients’ and associations’…
ERN-SKIN TRAINING SESSION IN GHENT (Belgium)
16th December : ERN-Skin, training session in Ghent (Belgium).
Organised…
Organised…
RARE DISEASES INTERNATIONAL (RDI) ANNUAL GLOBAL MEETING
Rare Disease International (RDI) Annual Meeting and Conference,…
EUROPEAN CONFERENCE ON RARE DISORDERS
European Conference on Rare Disorders (ECRD) on 14th and 15th…
EURORDIS ANNUAL GENERAL MEETING
Of course, during lockdown, many events and meetings have been…
SKIN RARE DISORDERS AND COVID-19
ERN-Skin and Covid 19_virus 07 04 2020
Dawn Laney, a RARE Hero
In its issue N°15, April 2020, Rare Revolution Magazine, talks…
David Ross, a RARE revolutionary
In its issue N°15, april 2020, Rare Revolution Magazine publishes…
COVID-19 PANDEMIA
PATIENTS WITH RARE CUTANEOUS DISORDERS ASSOCIATED WITH RECOGNISED…
New Contacts, Families’ News
A warm welcome to the CL patients who joined us in 2019 :
Lilah,…
Lilah,…
Does “Gaston Lagaff”, cartoon character, have Ehlers-Danlos Syndrom ?
Humorous, but very serious
Pr Mickaël Dinomais, Professor in…
Pr Mickaël Dinomais, Professor in…
FIMARAD VIDEOS
YOUTUBE CHANNEL FOR RARE DERMATOLOGIC DISEASES
The…
The…
THE GOSPEL CHOIR SINGS FOR CLI
Shortly before lockdown, the Gospel choir had organized a masterclass…
Dill Extract Induces Elastic Fiber Neosynthesis
Dill Extract Induces Elastic Fiber Neosynthesis and Functional…
THE PATIENT JOURNEY
THE PATIENT JOURNEY
(European Journal of Human Genetics : “…
(European Journal of Human Genetics : “…
GOOD-BYE JONNY
On 20th September 2004 I received a letter from Sweden. This…
ZEYNEP’S STORY
Video on SHOW TV, on facebook, about Zeynep diagnosed with Cutis…
MOHAMMED IN AUSTRIA
WHO HELPS MOHAMMED ?
Same article (in Dutch) in the newspapers
"De…
Same article (in Dutch) in the newspapers
"De…
LEADERSHIP SCHOOL IN BARCELONA
26 - 27th November Leadership School organised by Eurordis.
After…
After…
ERN-Skin Board Meeting 2019
ERN-Skin Board Meeting in Necker Hospital in Paris.
Two days…
Two days…
Cécile suffers from a rare genetic disorder
CAFFE.ch, swiss online magazine (in Italian)
2019.05.05
Read…
2019.05.05
Read…
Rare dermatologic diseases are neglected in drug development
Rare dermatologic diseases are neglected in drug development…
I AM 28, BUT MY SKIN LOOKS LIKE 65
L'illustré, swiss newspaper (in French)
2019.02.06
Watch…
2019.02.06
Watch…
ARTERYLASTIC : First real therapeutic hope
ARTERYLASTIC : First real therapeutic hope for vascular issue…