La Sorbonne University of the Patients

/in , , /by

Marie-Claude Boiteux was interviewed for the videos used during the Masterclass at the University for Patients in La Sorbonne (in French) (https://universitedespatients-sorbonne.fr/). The title of the presentation is “From loneliness to an International Organisation”.   see it  here (in French)

Dave Jacob’s interview on Grey Genetics Patient Stories Podcast

/in , , /by

Dave Jacob, founder fo ThinkGenetic, featured on the Grey Genetics Patient Stories Podcast on 30th January 2024.

He recounts his diagnostic journey, which ultimately led to a diagnosis of Cutis Laxa.

He shares how his personal experience as a rare disease patient inspired the inception of both ThinkGenetic Inc. and ThinkGenetic Foundation.

Give a listen

Visible Disorders of the Skin

/in , , /by

Cécile on the radio

/in , , /by

 

2023.04.19

Cécile was interviewed on the French Radio “Europe 1” in Olivier Delacroix’s broadcast “Free on-air : No judgement, no taboos, an open conversation” (in French)

https://www.europe1.fr/emissions/La-libre-antenne/cutis-laxa-cecile-est-enfermee-dans-un-corps-qui-parait-le-double-de-son-age-4178912

read this article (in French)

 

VISIBLE DISORDERS OF THE SKIN

/in , , /by

Podcast « Visible disorders of the skin » :

Visible disorders of the skin, whatever they are, draw gazes and induce various degrees of stigmatisation. This is the starting point of the VDS Programe with 3 big inititives : and epidemiology and prevalence  survey with 13138 respondants from 6 countries in late 2020, a Social Media Listening study thaht analysed over 20,000 messages posted on social medias during 3 years, and an application Patient Emotion App. to learn more about this study :    • Les Maladies Visi…  

Initiated by Patient Centricity Dpt at Pierre Fabre Laboratories.

Open up your ears and change your gaze on Visible Disorders of the Skin (in French)