6th CUTIS LAXA DAYS
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the University Hospital of Ghent( Belgium)
on 14th, 15th and 16th September 2022
SAVE THE DATES
The 6th Cutis Laxa Days will be held at the University Hospital of Ghent( Belgium)
on 14th, 15th and 16th September 2022
Set up 3 years ago by the European Commission, they aim to help patients with rare disorders receive a right diagnosis and follow-up, gather together all European experts and Patients Organisations to allow patients to get the best care.
The European Commission, Patients and ERN Coordinators give their point of view
European Commission (in almost all European Languages)
https://audiovisual.ec.europa.eu/en/video/I-193046
Patients (in English and/or with English subtitles)
https://audiovisual.ec.europa.eu/en/video/I-191813
ERN Coordinators (in English and/or with English subtitles)
The French Skin Federation (FFP) has launched videos (in French) from its member organisations on youtube.
Listen to Marie-Claude Boiteux talking about Cutis Laxa Internationale
The COVID crisis reveals how patients’ and associations’ role is poorly recognised (Newspaper Le Monde 2020.07.06)
In this newspaper article, three members of the French association Renaloo (kidney failure) make an unanimous statement : Associations of Health Users were forgotten in the heart of the sanitary crisis :
Nothing should be done without Us !
In its issue N°15, April 2020, Rare Revolution Magazine, talks about Dawn Laney, Dave Jacob’s daughter, who set up Thinkgenetic with her father. Dave is one of our members.
Humorous, but very serious
Pr Mickaël Dinomais, Professor in Physical and Readaptation Medicine, at the University of Angers (France), published a very interesting article.
He studied the famous French cartoon character “Gaston Lagaff” and, considering all the clinical features and symptoms, could diagnose that he suffers from Ehlers-Danlos Syndrom.
This is a very interesting and entertaining way to describe a disorder.
Read the all article, in French, at :
http://theconversation.com/gaston-lagaffe-a-t-il-un-syndrome-delhers-danlos-130907
YOUTUBE CHANNEL FOR RARE DERMATOLOGIC DISEASES
The French Network for rare dermatologic diseases has launched its youtube channel wher are posted videos about various issues (French talking):
Aesthetic Disability
https://www.youtube.com/watch?v=WO0FlVQ1B2k
Local Houses for Disabled People (MDPH)
https://www.youtube.com/watch?v=WO0FlVQ1B2k
Corrective Make-up
Video on SHOW TV, on facebook, about Zeynep diagnosed with Cutis Laxa
(In Turkish)
2019.12.10
Watch the video :
2 Yaşındaki Zeynep "Yaşlanma Hastalığı" ile mücadele ediyor! #ZahideYetişle
2 Yaşındaki Zeynep "Yaşlanma Hastalığı" ile mücadele ediyor! #ZahideYetişle
Publiée par Show TV sur Mardi 10 décembre 2019
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