CLI VIDEO ON YOUTUBE

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

 

Patients’ and associations’ role is poorly recognised

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 :

  • There were no official recommendations for « at risk » people.
  • Associations had to establish themselves « Recommendations for patients » based on international recommendations or those from other countries. ;
  • Nothing was set up to allow « at risk » people to stop working as soon as the crisis started ;
  • Cooperation with patients and their associations was considered incidental and with no priority ;
  • Despite the collective stakes we all had to face, democracy in health suffered a lot ;
  • Never quoted as being part of the various parties committed to protect vulnerable people, nevertheless patient associations were working on all fronts during this period ;
  • In France, except a few cases, patients associations have not yet reached the place they deserve in the medical world;
  • Government communication about vulnerable people focuses only on older aged people and forgets young and active people who are fragile too.

 

Nothing should be done without Us !

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.

Does “Gaston Lagaff”, cartoon character, have Ehlers-Danlos Syndrom ?

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

 

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

https://www.youtube.com/watch?v=US7frbb9atw

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 : http://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 : http://www.cutislaxa.org/wp-content/uploads/2020/02/lillustre-2019.02.06.pdf