CUTIS LAXA : News

Rare Diseases are included in Universal Health Coverage (UHC)

At last Rare Diseases are included in the United Nations political…
December 11, 2019/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
CLI

AND ALSO IN 2019

11th  April :  The Annual General Meeting of France Assos…
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

CHINESE ADVANCES

CHINA 
An article published in Bioscience Trends acknowledges…
September 18, 2019/by Marie-Claude

FANTASIA PARK July and August 2019

26th Juillet : We were very pleased to have a stand in Fantasia…
August 30, 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
meeting ptites etoiles

OUR LITTLE STARS

Once again this year, « Our Little Stars » gathered together…
March 17, 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
Welcome

NEW CONTACTS, FAMILIES’ NEWS

Since last July, Mina (Irak), Aimee (USA), Gül (Turquie), Rhett…
January 18, 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

UN Special Rapporteur calls for support for Rare Disease community

UN Special Rapporteur calls for support for Rare Disease community…
December 4, 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

A New Type of Cutis Laxa

In March, the American Journal of Medecine Genetics published…
March 31, 2018/by Marie-Claude
cmgg-Pr Bert CALLEWAERT

Research on Cutis Laxa in Europe

ERN-Skin’s aims are, among others, to improve patients’…
January 4, 2018/by sonja

Charente Libre « A woman with disabilities fights to get her hydrotherapy paid for by public health insurance »

21st December Charente Libre (French Newspaper): « A woman with…
December 21, 2017/by sonja

Le Temps (Swiss Newspaper) : « Cécile, Fighting is in her Blood ». Interview/portrait

December 9, 2017/by sonja

Dr Pascal Sommer took part in CNRS forum

Dr Pascal Sommer took part in CNRS (French National Centre for…
November 28, 2017/by sonja

Inter (National French Radio) Broadcast « Head squared »: interview of Dr Pascal Sommer presenting the CNRS Forum

Listen online
November 21, 2017/by sonja

New mutations (ATP6V1E1, ATP6V1A)

ATP6V1E1 or ATP6V1A, are the new mutations recently published…
July 1, 2017/by sonja