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

 

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)

 

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)

Thank you Mum for all you do for the patients (in French)

https://www.tiktok.com/@cecisuisse/video/7196318904304569605