Health Bulletins

New Clinic for People Living with Ehlers-Danlos Syndrome

Ontario Improving Access to Care for People with Rare Diseases

February 29, 2016

Ontario is taking steps to help people with rare diseases receive the best possible care by creating a new clinic that will focus on diagnosing and treating adults and children with Ehlers-Danlos Syndrome (EDS).

The new clinic would strengthen care and support for people living with EDS by offering primary care providers a single point of contact to:

The mandate of the clinic could also be expanded to support primary care providers treating people living with other rare diseases, if required.

The province is also creating a working group to explore how services for people with rare diseases in Ontario can be improved. The working group will be made up of Ontario experts who will look at:

Improving access to care for all Ontarians is also part of the government's plan to build a better Ontario through its Patients First: Action Plan for Health Care, which is providing patients with faster access to the right care, better home and community care, the information they need to stay healthy and a health care system that's sustainable for generations to come.

QUOTES

"People living with Ehlers-Danlos Syndrome and other rare diseases face enough challenges on a daily basis that finding the right care and support in Ontario shouldn't be one of them. The new initiatives our government is pursuing will help people living with Ehlers-Danlos Syndrome and other rare diseases access the supports they need so they can receive the highest quality of care close to home."
- Dr. Eric Hoskins, Minister of Health and Long-Term Care

"The establishment of the joint adult and pediatric EDS clinic is a big step forward in providing multi-disciplinary care and treatment for EDS patients in Ontario. This important model may also serve the needs of patients in the future who have similarly rare and complicated disorders. I am delighted that Minister Hoskins has supported the recommendations of the EDS Expert Panel."
- Dr. James T. Rutka, Co-Chair, Ehlers-Danlos Syndrome Expert Panel

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