June 21, 2023 About this event
Don’t Spend $1.5b on Rare Disease Drugs! … Without Including Patients!
On March 22, the federal government announced the long-awaited $1.5 billion national rare disease drug strategy. Since then, The SILENCE HAS BEEN DEAFENING.
The Canadian Organization for Rare Disorders (CORD) presented to the federal and provincial governments a comprehensive Rare Disease Framework calling for Centres of Expertise, designated accelerated drug access pathway, and research network, inclusion of patients throughout.
IT IS TIME TO BREAK THE SILENCE! Patients, clinicians, and other relevant stakeholders must be included as equal partners in discussions on implementation of the Drug Strategy, including federal-provincial negotiations.
CORD will continue collaboration with all stakeholders toward implementation of the Rare Disease Framework to optimize the RD Drug Strategy with a Webinar on June 21 and a two-day strategic design session on June 28-29 in Ottawa, hosted in-person and virtually.
Join CORD on June 21 @ 12 pm EDT in a review of Canada’s rare disease ecosystem and the Rare Disease Framework and why it is essential to funding innovative therapies for rare disease patients.