CUTIS LAXA : News
Cutis Laxa Videos …….. N°3
Here is the third episode of our videos.
A painful and emotional…
A painful and emotional…
Cutis Laxa Videos….. N°2
Here is the 2nd episode of the Cutis Laxa videos.
Marie-Claude…
Marie-Claude…
Cécile talks about Cutis Laxa
Here is a new video that has just been posted on social media.
Cécile…
Cécile…
Cutis Laxa Videos…… N°1
Here is the first of 8 videos edited by EwenLife on their Youtube…
They talk about us !!
EwenLife is dedicated to rare disorders. They made an interview…
FUNDRAISING PAGE
Help us raise enough funds to organise the next Cutis Laxa Days.
Go…
Go…
CUTIS LAXA WHITE BOOK
Since Cutis Laxa Internationale was set up, we have received…
The French Federation for Skin published its plea
The French Federation for skin is publishing its plea aiming…
Living with a Rare Disorder in France
Orphanet has just edited its new study about rare disorders in…
RARE 2030
On 23rd February 2021, celebrating 2021 Rare Disease Day, Eurordis…
New Members, News from the Families
Madalynn, Liam, Héloïse, Amelia, Brittany and her mother, Roxanne,…
Vaccination advices
A vaccination campaign against SARS-CoV-2 (COVID-19) infection…
20 YEARS AGO ……
Cécile was diagnosed in 1992.
8 years later, she appeared…
8 years later, she appeared…
Living with …. Cutis Laxa
The French monthly magazine "La Revue du Praticien" (The Medical…
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…
e-Book edited by the French Federation for Skin (FFP)
FFP has just issues its first e-book on :
"Cutaneous disorders…
"Cutaneous disorders…
Paris Dermatologic Days (JDP)
We were able to attend the JDP online, so as to be visible despite…
Annual Meeting and 2nd Conference of the French Federation for Skin
On 1st December 2020 we attended online the Annual Meeting and…
Annual Day of the French Network for Rare Skin Disorders
27th November 2020 : The Annual FIMARAD meeting (French Health…
CUTIS LAXA PATIENT JOURNEYS
We have developped 2 patient journeys based on testimonies from…
6th CUTIS LAXA DAYS
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the…
The 6th Cutis Laxa Days will be held at the…
Watch Cecile’s interview
All EPAGS ANNUAL MEETING
5th andt 6th November 2020 : Patient Representatives (ePAG) gathered…
1st Congress of the French Alliance for Rare Disorders
3rd November 2020 : The first Congress organised by the French…
WHAT IS AN ERN (European Reference Network) ? (Videos)
Set up 3 years ago by the European Commission, they aim to help…
RARE SKIN DISORDERS AND COVID-19 : An observationnal study
RARE SKIN DISORDERS AND COVID-19
An observational study was…
An observational study was…
Acquired Cutis Laxa associated with monoclonal gammapathy or multiple myeloma
A possible improvment of the symptoms in Acquired Cutis Laxa…
RESEARCH ON ACQUIRED CUTIS LAXA
A scientific study on Acquired Cutis Laxa (ACL) is led by
Pr…
Pr…
ERN-Skin Annual Board Meeting 2020
2nd October 2020 : ERN-Skin annual Board Meeting was a great…
ERN-Skin Board Meeting
On 2nd october 2020, ERN-Skin held its annual Board meeting,…
NEW MEMBERS, NEW FAMILIES
Caetano, Tamapa, Defne, Tami,Yusuf, Tracey, William, Atay Robin,…
CLI VIDEO ON YOUTUBE
The French Skin Federation (FFP) has launched videos (in French)…
“SUMMER MUSIC” IN FANTASIA PARK
7th August : After several months in lockdown, it was a real…
Patients’ and associations’ role is poorly recognised
The COVID crisis reveals how patients’ and associations’…
ERN-SKIN TRAINING SESSION IN GHENT (Belgium)
16th December : ERN-Skin, training session in Ghent (Belgium).
Organised…
Organised…
RARE DISEASES INTERNATIONAL (RDI) ANNUAL GLOBAL MEETING
Rare Disease International (RDI) Annual Meeting and Conference,…
EUROPEAN CONFERENCE ON RARE DISORDERS
European Conference on Rare Disorders (ECRD) on 14th and 15th…
EURORDIS ANNUAL GENERAL MEETING
Of course, during lockdown, many events and meetings have been…
SKIN RARE DISORDERS AND COVID-19
ERN-Skin and Covid 19_virus 07 04 2020
Dawn Laney, a RARE Hero
In its issue N°15, April 2020, Rare Revolution Magazine, talks…
David Ross, a RARE revolutionary
In its issue N°15, april 2020, Rare Revolution Magazine publishes…
COVID-19 PANDEMIA
PATIENTS WITH RARE CUTANEOUS DISORDERS ASSOCIATED WITH RECOGNISED…
New Contacts, Families’ News
A warm welcome to the CL patients who joined us in 2019 :
Lilah,…
Lilah,…
Does “Gaston Lagaff”, cartoon character, have Ehlers-Danlos Syndrom ?
Humorous, but very serious
Pr Mickaël Dinomais, Professor in…
Pr Mickaël Dinomais, Professor in…
FIMARAD VIDEOS
YOUTUBE CHANNEL FOR RARE DERMATOLOGIC DISEASES
The…
The…
THE GOSPEL CHOIR SINGS FOR CLI
Shortly before lockdown, the Gospel choir had organized a masterclass…
Dill Extract Induces Elastic Fiber Neosynthesis
Dill Extract Induces Elastic Fiber Neosynthesis and Functional…
THE PATIENT JOURNEY
THE PATIENT JOURNEY
(European Journal of Human Genetics : “…
(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…
Rare Diseases are included in Universal Health Coverage (UHC)
At last Rare Diseases are included in the United Nations political…
GOOD-BYE JONNY
On 20th September 2004 I received a letter from Sweden. This…
ZEYNEP’S STORY
Video on SHOW TV, on facebook, about Zeynep diagnosed with Cutis…
AND ALSO IN 2019
11th April : The Annual General Meeting of France Assos…
Report on “Disability and rare disease: towards person centered care for Australians with rare diseases”
AUSTRALIA : Report on “Disability and rare disease: towards…
FRENCH FEDERATION FOR SKIN
03rd December First Conference on Skin and Annual Meeting…
MOHAMMED IN AUSTRIA
WHO HELPS MOHAMMED ?
Same article (in Dutch) in the newspapers
"De…
Same article (in Dutch) in the newspapers
"De…
LEADERSHIP SCHOOL IN BARCELONA
26 - 27th November Leadership School organised by Eurordis.
After…
After…
World population affected by a Rare Disease
New evaluation of the world population affected by a Rare Disease :
In…
In…
ERN-Skin Board Meeting 2019
ERN-Skin Board Meeting in Necker Hospital in Paris.
Two days…
Two days…
CHINESE ADVANCES
CHINA
An article published in Bioscience Trends acknowledges…
An article published in Bioscience Trends acknowledges…
FANTASIA PARK July and August 2019
26th Juillet : We were very pleased to have a stand in Fantasia…
SOLHAND ANNUAL MEETING
The Annual General meeting of Solhand followed by the Annual…
Cécile suffers from a rare genetic disorder
CAFFE.ch, swiss online magazine (in Italian)
2019.05.05
Read…
2019.05.05
Read…
Rare dermatologic diseases are neglected in drug development
Rare dermatologic diseases are neglected in drug development…
OUR LITTLE STARS
Once again this year, « Our Little Stars » gathered together…
Rare Disease International Day 2019
Rare Disease International Day 2019
Over 100 countries took…
Over 100 countries took…
Rare Disease Day 28th February 2019
Join us to celebrate Rare Disease Day on 28th Februrary.
Raise…
Raise…
I AM 28, BUT MY SKIN LOOKS LIKE 65
L'illustré, swiss newspaper (in French)
2019.02.06
Watch…
2019.02.06
Watch…
ARTERYLASTIC : First real therapeutic hope
ARTERYLASTIC : First real therapeutic hope for vascular issue…
NEW CONTACTS, FAMILIES’ NEWS
Since last July, Mina (Irak), Aimee (USA), Gül (Turquie), Rhett…
Helplines for Rare Disorders worldwide
Helplines for rare disorders worldwide
Country
Organisation
Helpline…
Country
Organisation
Helpline…
“He is a real scamp”
12th January 2018 :
Article in Voralberg' newspaper (Germany)…
Article in Voralberg' newspaper (Germany)…
28th February 2019 : Rare Disease Day
Show your Rare, Show you care
28th February will be the International…
28th February will be the International…
And also in 2018………
19th November 2018 in Sireuil (Charente - France), the Triathlon…
Mohammed’s new life in Germany
28 Décembre 2018 :
Mohammed’s new life in Germany (Mohammed…
Mohammed’s new life in Germany (Mohammed…
Paris Dermatological Days (JDP)
13th December 2018 in Paris, we ended the year on a high…
UN Special Rapporteur calls for support for Rare Disease community
UN Special Rapporteur calls for support for Rare Disease community…
Cross-border care : 10 patient errors
European Commission publishes 10 patient errors in cross-border…
4th Conference on European Reference Networks (ERN)
21st-22nd November : The 4th Conference on European Reference…
Chiara, RAI2 (Italian television), broadcast DettoFatto
16th November 2018 :
RAI2 (Italian television), broadcast…
RAI2 (Italian television), broadcast…
3rd FIMARAD National Day
In Paris, on 16th November 2018, the 3rd (Rare Dermatological…
EURORDIS-Rare Barometer Voices
EURORDIS-Rare Barometer Voices (24.10.2018)
Results of the…
Results of the…
Prevalence of Cutis Laxa
Orphanet has just issued the new figures of rare disorders prevalence…
« Marie-Claude Boiteux, a volunteer mother fighting for her daughter suffering from an orphan disorder »
Le Dauphiné Libéré 2018.02.07
A New Type of Cutis Laxa
In March, the American Journal of Medecine Genetics published…
Research on Cutis Laxa in Europe
ERN-Skin’s aims are, among others, to improve patients’…
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…
Le Temps (Swiss Newspaper) : « Cécile, Fighting is in her Blood ». Interview/portrait
Dr Pascal Sommer took part in CNRS forum
Dr Pascal Sommer took part in CNRS (French National Centre for…
Inter (National French Radio) Broadcast « Head squared »: interview of Dr Pascal Sommer presenting the CNRS Forum
Listen online
New mutations (ATP6V1E1, ATP6V1A)
ATP6V1E1 or ATP6V1A, are the new mutations recently published…
Katy & Cecile
