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.
"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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