CUTIS LAXA : News

Paris Dermatologic Days (JDP)

We were able to attend the JDP online, so as to be visible  despite…
December 2, 2020/by Marie-Claude

Annual Meeting and 2nd Conference of the French Federation for Skin

On 1st December 2020 we attended online the Annual Meeting and…
December 1, 2020/by Marie-Claude

Annual Day of the French Network for Rare Skin Disorders

27th November 2020 :  The Annual FIMARAD meeting (French Health…
November 27, 2020/by Marie-Claude

CUTIS LAXA PATIENT JOURNEYS

We have developped 2 patient journeys based on testimonies from…
November 24, 2020/by Marie-Claude

6th CUTIS LAXA DAYS

SAVE THE DATES
The 6th Cutis Laxa  Days will be held at the…
November 19, 2020/by Marie-Claude

Watch Cecile’s interview

November 10, 2020/by Marie-Claude

All EPAGS ANNUAL MEETING

5th andt 6th November 2020 : Patient Representatives (ePAG) gathered…
November 5, 2020/by Marie-Claude

1st Congress of the French Alliance for Rare Disorders

3rd November 2020 :  The first Congress organised by the French…
November 3, 2020/by Marie-Claude

WHAT IS AN ERN (European Reference Network) ? (Videos)

Set up 3 years ago by the European Commission, they aim to help…
November 2, 2020/by Marie-Claude

RARE SKIN DISORDERS AND COVID-19 : An observationnal study

RARE SKIN DISORDERS AND COVID-19
An observational study was…
October 30, 2020/by Marie-Claude

Acquired Cutis Laxa associated with monoclonal gammapathy or multiple myeloma

A possible improvment of the symptoms in Acquired Cutis Laxa…
October 15, 2020/by Marie-Claude
cmgg-Pr Bert CALLEWAERT

RESEARCH ON ACQUIRED CUTIS LAXA

A scientific study on Acquired Cutis Laxa (ACL) is led by
Pr…
October 15, 2020/by Marie-Claude

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
Welcome

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-Claude

Patients’ 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-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

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