Health Bulletin

This document was published under a previous government.

Ontario Supporting People Living with Rare Diseases

Province Releases Working Group Report

December 8, 2017

Ontario is improving access to specialized care and treatment for people living with rare diseases by implementing a number of recommendations made in the first Rare Diseases Working Group Report.

Based on the recommendations in this report, and with the goal of helping patients in need and their families, the province will move forward with:

Following the implementation of these key priorities, the ministry will explore further opportunities to enhance the care and treatment for people living with rare diseases.

Members of the Working Group include patients, caregivers, patient advocates and health care professionals that have extensive experience treating people living with rare diseases.

A Rare Disease Implementation Plan Steering Committee, co-chaired by Dr. Ronald Cohn and Scott McIntaggart, has been established to implement the identified priorities.

Ontario’s plan to create fairness and opportunity during this period of rapid economic change includes a higher minimum wage and better working conditions, free tuition for hundreds of thousands of students, easier access to affordable child care, and free prescription drugs for everyone under 25 through the biggest expansion of medicare in a generation.

“I would like to thank the working group for their work on this report and for providing recommendations on how to improve access to care for those living with a rare disease. People living with these conditions face challenges on a daily basis and our government is committed to providing the services and supports they need.”
– Dr. Eric Hoskins, Minister of Health and Long-Term Care

“I am incredibly pleased with the outcome of our Rare Diseases Working Group. I believe this report will provide a blueprint towards a rare disease strategy, not only for Ontario, but will also serve as a catalyst to leverage efforts in rare disease collaborations on a national level. I am excited to now work with colleagues and patient advocates to address the identified recommendations which will undoubtedly improve our diagnosis and management of patients living with rare diseases in Ontario.”
– Dr. Ronald Cohn, Chief of Paediatrics,
SickKids; Chair of Paediatrics, University of Toronto; Co-chair, Rare Disease Working Group



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