The Rare Diseases Foundation offers you a bi-annual meeting on key topics in the field of rare diseases with the support of the Groupama Foundation Vaincre les maladies rares: a 20-30 minute exchange between experts to follow live!
This 2nd edition will take place on January 8, 2020 at 2:00 pm live on our Youtube channel
Announcement of the diagnosis and after? Parents facing the announcement of a rare disease
The speakers will be:
Marcela Gargiulo
Professor of Psychology at the University of Paris and Psychologist at the Institute of Myology of the Pitié-Salpétrière Hospital.
Odile Boespflug-TanguyProfessor of Medical Genetics at the University of Paris, Neuropediatrician at the Robert Debré Hospital, Director of the I-Motion Institute at the Trousseau Hospital, President of the Scientific Council of the AFM-Telethon.
Laetitia LaichCombative, committed and positive mother of 40 years.
"I live in the suburbs of Paris with my two boys: Arthur, 8 and Oscar 5. Oscar is the reason I am involved. He was diagnosed with SMA type 2 when he was 1 year old. Since then, it has been a daily struggle; setting up his care, adapting and equipping his living spaces, access to school. We are well supported by our family and friends even if they cannot understand this daily struggle. Today a treatment is available, after the happiness, I have to readapt our life, to answer to Oscar's new needs and to manage the hope that this gives rise to.
Webcast hosted by Diana Désir-Parseille
Head of research administration at the Rare Diseases Foundation
To find information, click here