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Ontario Launches Working Group to Benefit People Living with Rare Diseases

Province Supporting Improved Diagnosis, Treatment, and Access to Care


September 2, 2016

Ontario has established a Rare Disease Working Group to identify how Ontario's health care system can better manage the treatment of rare diseases, including strengthening diagnosis and treatment for patients living with rare diseases and improving access to care.

The Working Group will develop a framework to guide service delivery improvements for people living with rare diseases and will consider: 
  • Diagnostic capacity and early detection of rare diseases
  • Timely access to equitable and evidence-based care, including supports to primary care providers in identifying and managing rare diseases
  • Access to complex care and rehabilitation
  • Access to clinical trials and potential promising therapies
  • Innovative research on the diagnosis and treatment of rare diseases.

Members of the Working Group include patients, caregivers, patient advocates and experts who work in Ontario's health care system and have extensive experience treating and caring for people living with rare diseases. The group is Co-Chaired by:

  • Dr. Ronald Cohn, Paediatrician-in-Chief, The Hospital for Sick Children
  • Scott McIntaggart, Senior Vice-President, University Health Network

The Working Group will submit an interim report in fall 2016.

Developing a framework to help people with rare diseases receive the best possible care is part of the government's plan to build a better Ontario through its Patients First: Action Plan for Health Care, which provides patients with faster access to the right care; better home and community care; the information they need to live healthy; and a health care system that is sustainable for generations to come.

QUOTES

"We are proud of the work that Ontario has done to improve access to care for patients with rare diseases, but we know that more work needs to be done. The Rare Disease Working Group, comprised of clinical experts and patient advocates, is an important step in exploring how services for people with rare diseases in Ontario can be improved. I look forward to meeting with the working group to hear their ideas for how we can improve our health care system and improve the way we treat rare diseases for patients and their families."
—  Dr. Eric Hoskins, Minister of Health and Long-Term Care

"Over the last few years, improvements in technology and science have significantly increased our ability to establish diagnoses for patients with rare diseases. This has already and will continue to improve our ability to manage and treat patients with rare diseases. The Rare Disease Working Group is an important initiative that will enable us to further develop a strategy to assess cost-effective and equitable access to diagnosis and treatment options for all patients with rare diseases."
—  Dr. Ronald Cohn, Paediatrician-in-Chief, The Hospital for Sick Children

"Through the Working Group on Rare Diseases, Ontario is bringing together experts and patients with lived experience to explore how services for people with rare diseases can be improved. By looking at how we can improve detection, prevention and timely access to care, the Ontario government is taking an important step towards improving supports for patients with rare diseases."
— Scott McIntaggart, Senior Vice-President, University Health Network

QUICK FACTS

  • A rare disease is a life-threatening or chronically debilitating disease that affects approximately five people out of 10,000 and requires special, combined efforts to enable patients to be diagnosed and treated effectively. 
  • It is estimated that there are about 7,000 rare diseases.
  • On February 29, 2016, the Minister announced the creation of a working group to explore how services in Ontario for people with rare diseases can be improved. The Working Group's Terms of Reference and membership were determined through consultation with Critical Care Services of Ontario and the ministry, to ensure broad representation. 
  • Ontario is currently co-leading a pan-Canadian Rare Disease working group with British Columbia and Alberta to develop a national strategy to improve access to pharmaceuticals for rare diseases and address their high costs.

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