CUTIS LAXA : News

RESEARCH ON ACQUIRED CUTIS LAXA
A scientific study on Acquired Cutis Laxa (ACL) is led by
Pr…
October 15, 2020/by Marie-ClaudePr…

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
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-ClaudePatients’ 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-ClaudeOrganised…

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-ClaudeSKIN 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
New Contacts, Families’ News
A warm welcome to the CL patients who joined us in 2019 :
Lilah,…
February 27, 2020/by Marie-ClaudeLilah,…

Does “Gaston Lagaff”, cartoon character, have Ehlers-Danlos Syndrom ?
Humorous, but very serious
Pr Mickaël Dinomais, Professor in…
February 27, 2020/by Marie-ClaudePr Mickaël Dinomais, Professor in…

FIMARAD VIDEOS
YOUTUBE CHANNEL FOR RARE DERMATOLOGIC DISEASES
The…
February 15, 2020/by Marie-ClaudeThe…

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
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-ClaudeSame 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…
May 5, 2019/by Marie-Claude2019.05.05
Read…

I AM 28, BUT MY SKIN LOOKS LIKE 65
L'illustré, swiss newspaper (in French)
2019.02.06
Watch…
February 6, 2019/by Marie-Claude2019.02.06
Watch…

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-ClaudeCountry
Organisation
Helpline…

“He is a real scamp”
12th January 2018 :
Article in Voralberg' newspaper (Germany)…
January 12, 2019/by Marie-ClaudeArticle in Voralberg' newspaper (Germany)…

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

Chiara, RAI2 (Italian television), broadcast DettoFatto
16th November 2018 :
RAI2 (Italian television), broadcast…
November 16, 2018/by Marie-ClaudeRAI2 (Italian television), broadcast…

« 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