CUTIS LAXA : News
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…
FUNDRAISING PAGE
Help us raise enough funds to organise the next Cutis Laxa Days.
Go…
Go…
Watch Cecile’s interview
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 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)…
CUTIS LAXA WHITE BOOK
Since Cutis Laxa Internationale was set up, we have received…
“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…
Alabama Rare Diseases Advisory Council
Alabama Rare Diseases Advisory Council held its first meeting
The…
The…
Prevalence of Cutis Laxa
Orphanet has just issued the new figures of rare disorders prevalence…
Musical “summer” at the Parc Fantasia
On 5th august 2018, on the occasion of the "musical-evenings"…
Improving life journey for children suffering from rare disorders
The partnership signed, 3 years ago, between Fondation Groupama…
« Marie-Claude Boiteux, a volunteer mother fighting for her daughter suffering from an orphan disorder »
Le Dauphiné Libéré 2018.02.07
Funding the French Centers of Reference
From several months and continuing, the Public Authorities have…
ERN-Skin
The specific European Reference Network concerning Cutis Laxa…
9th European Conference on Rare Diseases
10th to 12th May : European Conference on Rare Diseases in Vienna…
MEETING WITH “OUR LITTLE STARS”
The organisation « Our Little Stars » welcomed us for a day…
A New Type of Cutis Laxa
In March, the American Journal of Medecine Genetics published…
« French people and Rare Disorders »
This is a survey carried out for the ‘Fondation Groupama’.…
Brexit: How might it affect health and healthcare in the UK
A study published in The Lancet approaches the Brexit situation…
European Reference Networks (ERNs)
After a whole year of tangible work, we need to take stock of…
Extension of the care leave for the parents of children with disabilities in Belgium
On 22nd January, during the National Council on Work, the Belgian…
Italy – Leaflet new national rights in healthcare
Italy : The National Observatory on Rare Disorders (OMAR www.osservatoriomalattierare.it…
Research on Cutis Laxa in Europe
ERN-Skin’s aims are, among others, to improve patients’…
We are happy to welcome the brand new members :
Laurie and Zachary, Charlotte, Addison, Andrei, Alexandra, Juan…
EURORDIS published the results of the first European survey on the social impact of rare disorders :
According to this survey, rare disorders have a major impact…
Luxemburg : First Information Meeting on the Future National Plan on Rare Disorders
It has been estimated that 30,000 people suffer from a rare disorder…
China : Public Attitudes towards Gene Therapy
A study published in Molecular Therapy identifies public attitudes…
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…
European Reference Networks and RD-ACTION are tackling challenges concerning Clinical Practice Guidelines
(Orphanews 2018.12.19)
RD-ACTION set-out to add value by working…
RD-ACTION set-out to add value by working…
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…
European Commission launches its Horizon 2020 Health Research Programme 2018-2020 including rare diseases
(Orphanews 2018.11.28)
Within the call « Better Health and…
Within the call « Better Health and…
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…
Patient representative for connective tissue disorders
When the European Reference Networks (ERN) was set up, The European…
Patient Representatives’ role and responsibilities in ERN-Skin
Patient Representatives, gathered in the Patient Representative…
Katy & Cecile
