As part of the EFFERVESCENCE conference, the Research Centre on Rare and Genetic Diseases in Adults of the IRCM and the Centre d'excellence en recherche sur les maladies orphelines – Fondation Courtois (CERMO-FC) of UQAM are organizing a plenary session on rare and orphan on Wednesday, April 24, from 10:30 a.m. to 12 p.m., at La Tohu.
The purpose of this plenary session, entitled Living With a Rare Disease and Dealing With the Resources Available in Quebec, is to demonstrate the relevance of implementing a Quebec policy on rare and orphan diseases as well as the need for the various stakeholders in the sector to begin working together to develop integrated approaches to intervention.
• How do we define a rare disease and orphan disease and what are the consequences for patients?
• What are the potential solutions for treatment and care of patients with a rare and/or orphan disease in Quebec?
• What is the current situation and what would be the benefit of the establishment of a Quebec policy on rare and orphan diseases?
Hosted by Sophie-Andrée Blondin, journalist and host of Radio-Canada’s Les Années lumière, the plenary will include as panellists Cynthia Turcotte, a patient with a rare disease, Jacques Michaud of CHU Sainte-Justine, Sophie Bernard of the IRCM, Nicolas Pilon of UQAM, and Gail Ouellette of the Regroupement québécois des maladies orphelines.
EFFERVESCENCE is a new and distinctive annual event of two days co-developed by a group of 14 partners that have joined forces to develop a major life sciences event. This conference offers a varied program that addresses the entire ecosystem of life sciences and health technologies.