CUTIS LAXA : News

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

Report on “Disability and rare disease: towards person centered care for Australians with rare diseases”

AUSTRALIA : Report on “Disability and rare disease: towards…
December 6, 2019/by Marie-Claude

FRENCH FEDERATION FOR SKIN

03rd  December  First Conference on Skin and Annual Meeting…
December 3, 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

World population affected by a Rare Disease

New evaluation of the world population affected by a Rare Disease :
In…
October 8, 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

SOLHAND ANNUAL MEETING

The Annual General meeting of Solhand followed by the Annual…
June 15, 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

Helplines for Rare Disorders worldwide

Helplines for rare disorders worldwide



Country
Organisation     
Helpline…
January 15, 2019/by Marie-Claude

“He is a real scamp”

12th January 2018 :

Article in Voralberg' newspaper (Germany)…
January 12, 2019/by Marie-Claude

Mohammed’s new life in Germany

28 Décembre 2018 :

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

Chiara, RAI2 (Italian television), broadcast DettoFatto

16th November 2018 :

RAI2 (Italian television), broadcast…
November 16, 2018/by Marie-Claude

Prevalence of Cutis Laxa

Orphanet has just issued the new figures of rare disorders prevalence…
September 30, 2018/by Marie-Claude

« 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