CUTIS LAXA : News

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

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

WHO (World Health Organisation) signs a memorandum of understanding with Rare Disease International (RDI).

WHO (World Health Organisation) signs a memorandum of understanding…
December 19, 2019/by Marie-Claude

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

Rare Disease International Day 2019

Rare Disease International Day 2019
Over 100 countries took…
February 28, 2019/by Marie-Claude

Rare Disease Day 28th February 2019

Join us to celebrate Rare Disease Day on 28th Februrary.

Raise…
February 21, 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

28th February 2019 : Rare Disease Day

Show your Rare, Show you care

28th February will be the International…
January 10, 2019/by Marie-Claude

And also in 2018………

19th November 2018 in Sireuil (Charente - France), the Triathlon…
December 31, 2018/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

Paris Dermatological Days (JDP)

13th December 2018 in Paris, we ended the year on a high…
December 13, 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

Cross-border care : 10 patient errors

European Commission publishes 10 patient errors in cross-border…
December 4, 2018/by Marie-Claude

4th Conference on European Reference Networks (ERN)

21st-22nd November : The 4th Conference on European Reference…
November 21, 2018/by Marie-Claude

Chiara, RAI2 (Italian television), broadcast DettoFatto

16th November 2018 :

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

3rd FIMARAD National Day

In Paris, on 16th  November 2018,  the 3rd (Rare Dermatological…
November 16, 2018/by Marie-Claude

EURORDIS-Rare Barometer Voices

EURORDIS-Rare Barometer Voices (24.10.2018)

Results of the…
October 24, 2018/by Marie-Claude

Alabama Rare Diseases Advisory Council

Alabama Rare Diseases Advisory Council held its first meeting

The…
October 10, 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

Musical “summer” at the Parc Fantasia

On 5th august 2018, on the occasion of the "musical-evenings"…
August 5, 2018/by Marie-Claude

Improving life journey for children suffering from rare disorders

The partnership signed, 3 years ago, between Fondation Groupama…
July 10, 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

Funding the French Centers of Reference

From several months and continuing, the Public Authorities have…
June 30, 2018/by Marie-Claude

ERN-Skin

The specific European Reference Network concerning Cutis Laxa…
June 30, 2018/by Marie-Claude

9th European Conference on Rare Diseases

10th to 12th May : European Conference on Rare Diseases in Vienna…
May 10, 2018/by Marie-Claude

MEETING WITH “OUR LITTLE STARS”

The organisation « Our Little Stars » welcomed us for a day…
April 8, 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

« French people and Rare Disorders »

This is a survey carried out for the ‘Fondation Groupama’.…
March 28, 2018/by Marie-Claude

Brexit: How might it affect health and healthcare in the UK

A study published in The Lancet approaches the Brexit situation…
February 15, 2018/by Marie-Claude
ERN logo

European Reference Networks (ERNs)

After a whole year of tangible work, we need to take stock of…
February 2, 2018/by Marie-Claude

Extension of the care leave for the parents of children with disabilities in Belgium

On 22nd January, during the National Council on Work, the Belgian…
January 22, 2018/by Marie-Claude

Italy – Leaflet new national rights in healthcare

Italy : The National Observatory on Rare Disorders (OMAR www.osservatoriomalattierare.it…
January 9, 2018/by sonja
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
Welcome

We are happy to welcome the brand new members :

Laurie and Zachary, Charlotte, Addison, Andrei, Alexandra, Juan…
January 2, 2018/by sonja

EURORDIS published the results of the first European survey on the social impact of rare disorders :

According to this survey, rare disorders have a major impact…
January 2, 2018/by sonja

Luxemburg : First Information Meeting on the Future National Plan on Rare Disorders

It has been estimated that 30,000 people suffer from a rare disorder…
January 2, 2018/by sonja

China : Public Attitudes towards Gene Therapy

A study published in Molecular Therapy identifies public attitudes…
January 2, 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
ERN logo

European Reference Networks and RD-ACTION are tackling challenges concerning Clinical Practice Guidelines

(Orphanews 2018.12.19)

RD-ACTION set-out to add value by working…
December 19, 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

European Commission launches its Horizon 2020 Health Research Programme 2018-2020 including rare diseases

(Orphanews 2018.11.28)

Within the call « Better Health and…
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
2017-11-28-ERN Paris

ERN-Skin Meeting (Paris)

120 attendees, doctors, researchers and patient representatives…
November 20, 2017/by sonja

New mutations (ATP6V1E1, ATP6V1A)

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

Patient representative for connective tissue disorders

When the European Reference Networks (ERN) was set up, The European…
June 24, 2017/by sonja
ERN skin

Patient Representatives’ role and responsibilities in ERN-Skin

Patient Representatives, gathered in the Patient Representative…
June 19, 2017/by sonja

Katy & Cecile

April 19, 2017/by sonja

5th Cutis Laxa Days 2016 (Annecy)

May 19, 2016/by sonja