CUTIS LAXA : News
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…
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…
Cécile suffers from a rare genetic disorder
CAFFE.ch, swiss online magazine (in Italian)
2019.05.05
Read…
2019.05.05
Read…
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…
Helplines for Rare Disorders worldwide
Helplines for rare disorders worldwide
Country
Organisation
Helpline…
Country
Organisation
Helpline…
“He is a real scamp”
12th January 2018 :
Article in Voralberg' newspaper (Germany)…
Article in Voralberg' newspaper (Germany)…
Mohammed’s new life in Germany
28 Décembre 2018 :
Mohammed’s new life in Germany (Mohammed…
Mohammed’s new life in Germany (Mohammed…
Chiara, RAI2 (Italian television), broadcast DettoFatto
16th November 2018 :
RAI2 (Italian television), broadcast…
RAI2 (Italian television), broadcast…
« Marie-Claude Boiteux, a volunteer mother fighting for her daughter suffering from an orphan disorder »
Le Dauphiné Libéré 2018.02.07
A New Type of Cutis Laxa
In March, the American Journal of Medecine Genetics published…
New mutations (ATP6V1E1, ATP6V1A)
ATP6V1E1 or ATP6V1A, are the new mutations recently published…