CUTIS LAXA : News

Cutis Laxa Videos …….. N°3

Here is the third episode of our videos.
A painful and emotional…
April 19, 2021/by Marie-Claude

Cutis Laxa Videos….. N°2

Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude…
April 12, 2021/by Marie-Claude

Cécile talks about Cutis Laxa

Here is a new video that has just been posted on social media.
Cécile…
April 8, 2021/by Marie-Claude

Cutis Laxa Videos…… N°1

Here is the first of 8 videos edited by EwenLife on their Youtube…
April 7, 2021/by Marie-Claude

They talk about us !!

EwenLife is dedicated to rare disorders. They made an interview…
April 7, 2021/by Marie-Claude

FUNDRAISING PAGE

Help us raise enough funds to organise the next Cutis Laxa Days.

Go…
April 1, 2021/by Marie-Claude

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

Living with a Rare Disorder in France

Orphanet has just edited its new study about rare disorders in…
March 10, 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

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

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

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

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

Katy & Cecile

April 19, 2017/by sonja

5th Cutis Laxa Days 2016 (Annecy)

May 19, 2016/by sonja