Dawn Laney, a RARE Hero
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.
David Ross, a RARE revolutionary
In its issue N°15, april 2020, Rare Revolution Magazine publishes an interview with David Ross, one of our members.
FIMARAD VIDEOS
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
ZEYNEP’S STORY
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
MOHAMMED IN AUSTRIA
WHO HELPS MOHAMMED ?
Same article (in Dutch) in the newspapers
“De Morgen” (Belgium) and “De Volkskrant” (Austria).
2019.12.01
Read the article online : https://www.demorgen.be/nieuws/wie-helpt-mohamad-hoe-liefdadigheid-een-syrisch-gezin-in-oostenrijk-verstikte~b0765328/
Or here : https://www.cutislaxa.org/wp-content/uploads/2020/02/De-Morgen-et-De-Volkskrant-Mohammed-2019.12.01.pdf
Cécile suffers from a rare genetic disorder
CAFFE.ch, swiss online magazine (in Italian)
2019.05.05
Read the article on line :
http://www.caffe.ch/stories/Storie/62873_ho_appena_28_anni_ne_dimostro_il_doppio/
I AM 28, BUT MY SKIN LOOKS LIKE 65
L’illustré, swiss newspaper (in French)
2019.02.06
Watch the video : https://www.facebook.com/1081337022/posts/10215330750396949/
Read the article : https://www.cutislaxa.org/wp-content/uploads/2020/02/lillustre-2019.02.06.pdf
“He is a real scamp”
12th January 2018 :
Article in Voralberg’ newspaper (Germany) about Mohammed after the video report.
Read the whole article at :
https://www.vn.at/lokal/vorarlberg/2019/01/11/er-ist-ein-richtiger-lausbub.vn
Mohammed’s new life in Germany
28 Décembre 2018 :
Mohammed’s new life in Germany (Mohammed is a Syrian refugee suffering from CL)
(broadcast in Arabic and English in some parts)
https://m.facebook.com/story.php?story_fbid=10217703840526118&id=1183293593
Chiara, RAI2 (Italian television), broadcast DettoFatto
16th November 2018 :
RAI2 (Italian television), broadcast DettoFatto, report on Chiara’s face reconstruction surgery.
See the report on
https://www.facebook.com/DettoFattoRai2/videos/181625632784663/