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-ClaudeA painful and emotional…

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

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-ClaudeGo…

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
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-Claude8 years later, she appeared…

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"Cutaneous disorders…

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-ClaudeThe 6th Cutis Laxa Days will be held at the…

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-ClaudeAn observational study was…

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
RESEARCH ON ACQUIRED CUTIS LAXA
A scientific study on Acquired Cutis Laxa (ACL) is led by
Pr…
October 15, 2020/by Marie-ClaudePr…

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
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-ClaudePatients’ 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-ClaudeOrganised…

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-ClaudeSKIN 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
New Contacts, Families’ News
A warm welcome to the CL patients who joined us in 2019 :
Lilah,…
February 27, 2020/by Marie-ClaudeLilah,…

Does “Gaston Lagaff”, cartoon character, have Ehlers-Danlos Syndrom ?
Humorous, but very serious
Pr Mickaël Dinomais, Professor in…
February 27, 2020/by Marie-ClaudePr Mickaël Dinomais, Professor in…

FIMARAD VIDEOS
YOUTUBE CHANNEL FOR RARE DERMATOLOGIC DISEASES
The…
February 15, 2020/by Marie-ClaudeThe…

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(European Journal of Human Genetics : “…

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
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-ClaudeSame article (in Dutch) in the newspapers
"De…

LEADERSHIP SCHOOL IN BARCELONA
26 - 27th November Leadership School organised by Eurordis.
After…
November 28, 2019/by Marie-ClaudeAfter…

World population affected by a Rare Disease
New evaluation of the world population affected by a Rare Disease :
In…
October 8, 2019/by Marie-ClaudeIn…

ERN-Skin Board Meeting 2019
ERN-Skin Board Meeting in Necker Hospital in Paris.
Two days…
October 4, 2019/by Marie-ClaudeTwo days…

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

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-Claude2019.05.05
Read…
Rare dermatologic diseases are neglected in drug development
Rare dermatologic diseases are neglected in drug development…
April 12, 2019/by Marie-Claude
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-ClaudeOver 100 countries took…

Rare Disease Day 28th February 2019
Join us to celebrate Rare Disease Day on 28th Februrary.
Raise…
February 21, 2019/by Marie-ClaudeRaise…

I AM 28, BUT MY SKIN LOOKS LIKE 65
L'illustré, swiss newspaper (in French)
2019.02.06
Watch…
February 6, 2019/by Marie-Claude2019.02.06
Watch…

ARTERYLASTIC : First real therapeutic hope
ARTERYLASTIC : First real therapeutic hope for vascular issue…
January 21, 2019/by Marie-Claude
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-ClaudeCountry
Organisation
Helpline…

“He is a real scamp”
12th January 2018 :
Article in Voralberg' newspaper (Germany)…
January 12, 2019/by Marie-ClaudeArticle in Voralberg' newspaper (Germany)…

28th February 2019 : Rare Disease Day
Show your Rare, Show you care
28th February will be the International…
January 10, 2019/by Marie-Claude28th February will be the International…

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-ClaudeMohammed’s new life in Germany (Mohammed…

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-ClaudeRAI2 (Italian television), broadcast…

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-ClaudeResults of the…
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
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