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:
- Supporting better patient care by establishing a centralized system where clinical expertise and educational resources on rare diseases will be available to health care providers across the province
- Developing a plan to improve access to genetic testing
- Creating an Ontario-specific rare disease registry that will help foster research and innovation in the discovery, management and treatment of rare diseases.
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.”
“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.”
SickKids; Chair of Paediatrics, University of Toronto; Co-chair, Rare Disease Working Group
QUICK FACTS
- The Rare Disease Implementation Plan Steering Committee members are: Dr. Ronald Cohn, Scott McIntaggart, Dr. Pranesh Chakraborty, Mari Teitelbaum, Dr. Bernard Lawless, and Linda Kostrzewa.
- A rare disease is a life-threatening or chronically debilitating disease that affects five people or fewer in 10,000 and requires special, combined efforts to enable patients to be diagnosed and treated effectively.
- Approximately 7,000 rare diseases have been identified.
- In February 2017, Ontario announced the opening of the new Ehlers-Danlos Syndrome (EDS) clinic and the expansion of inherited metabolic disorders and red blood cell disorders clinics.
- In January 2016, Ontario developed a Clinical Handbook to help broaden clinical knowledge about best practices for treating patients with Sickle Cell Disease
LEARN MORE
- Rare Disease Working Group Report
- Ontario Expanding Clinics for People Living With Rare Diseases
- Patients First: Action Plan for Health Care
- Canadian Organization for Rare Disorders
For More Information
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