IRCEM Corporate Foundation conference "Living better with a rare disease: the challenges of gaining autonomy

This event has already taken place, but you can still consult some information.

Living with a rare disease The challenges of independence

9:00- 9:30 Welcome coffee

9:30 - 9:45 a.m. Opening

- Presentation of the IRCEM Corporate Foundation - Jean-Charles Grollemund, Chief Executive Officer, IRCEM Group
- Why support research in the humanities and social sciences? - Nathalie Coulon, President of the IRCEM Foundation
- The role of the IRCEM Corporate Foundation in supporting patients, families and caregivers - Pr Daniel Scherman, Director of the Foundation For Rare Diseases

Great witness
Manon Picchi, teenagers and young adults referent for the POIC association, invited as a patient expert.

9h45-11h30 : Improving the life course of patients and their families
The transition from pediatrics to adult medicine

Video testimonial from LA SUITE, Necker, Assistance publique - Hôpitaux de Paris "What is transition?"

- Winning project: "Becoming an adult with a developmental anomaly".
- Laura Silvestri, doctor in social anthropology and ethnology

- Florence Roy Baconnet, Director of the rare diseases health network

- Winning project: "Plateforme de transition: comprendre les attentes des parents des jeunes porteurs de maladies rares" (Transition platform: understanding the expectations of parents of young rare disease carriers)
- Agnès Dumas, sociologist, research fellow at INSERM

- Helène Mellerio, pediatrician and adolescent physician
- Nadine Pezières, member of the Board of Directors of the KOURIR association, health executive and nurse trainer

- Discussion with the audience

11:30am-1:00pm: Improving care for patients and their families
The cost of rare diseases

Great witness

-Presentation of the 1st results of a study to assess the economic and social impact of rare pathologies
- Nadia Bahi-Buisson, coordinator of Necker's Centre de référence des déficiences intellectuelles de causes rares
- Bruno Detournay, medical economist, Director of CEMKA
- Anne Duburcq, epidemiologist, study director at CEMKA

- Winning project "What out-of-pocket expenses do patients suffering from primary lymphedema have to pay in France? The LymphoRAC study?"
- Grégoire Mercier, public health physician, hospital practitioner

- Discussion with the audience


1:00 pm - 2:00 pm : cocktail reception