CUTIS LAXA : News

CUTIS LAXA WHITE BOOK

Since  Cutis Laxa Internationale was set up, we have received…
March 31, 2021/by Marie-Claude

The French Federation for Skin published its plea

The French Federation for skin is publishing its plea aiming…
March 17, 2021/by Marie-Claude

Painting contest

1st prize in the 14-18 age range.
The drawing competititon…
March 15, 2021/by Marie-Claude

Living with a Rare Disorder in France

Orphanet has just edited its new study about rare disorders in…
March 10, 2021/by Marie-Claude

Globalskin (International Organisation for Skin Disorders) held two events early this year

On 25th February : Webinar : « The Power of the Patient Community…
March 4, 2021/by Marie-Claude

Rare 2030 conference update

On 23rd February : The European Commissioner for Health and…
February 25, 2021/by Marie-Claude

RARE 2030

On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis…
February 23, 2021/by Marie-Claude
Welcome

New Members, News from the Families

Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne,…
February 15, 2021/by Marie-Claude

Rare Disease International (RDI) Activities

Rare Disease International (RDI) organised several events in…
February 4, 2021/by Marie-Claude

“Hacking Health” Challenge in Lyon (France)

During three days (14th, 15th and 16th January 2021) we took…
January 20, 2021/by Marie-Claude

Vaccination advices

A vaccination campaign against SARS-CoV-2 (COVID-19) infection…
January 11, 2021/by Marie-Claude

20 YEARS AGO ……

Cécile was diagnosed in 1992.

8 years later, she appeared…
December 22, 2020/by Marie-Claude

Living with …. Cutis Laxa

The French monthly magazine "La Revue du Praticien" (The Medical…
December 15, 2020/by Marie-Claude

Patients Representatives’ (EPAGs) work in 2019-2020 in the European Reference Network-Skin (ERN-Skin)

During the 5th annual meeting of the French Health Network FIMARAD…
December 9, 2020/by Marie-Claude

e-Book edited by the French Federation for Skin (FFP)

FFP has just issues its first e-book on :

"Cutaneous disorders…
December 8, 2020/by Marie-Claude

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