TORONTO — Ontario will set up a new clinic to diagnose and treat people with Ehlers-Danlos Syndrome, or EDS, and it could expand to help patients with other rare diseases.
About one in 5,000 people in the province live with EDS, a genetically-inherited disease that includes a group of connective tissue disorders, and causes acute and chronic pain, joint dislocation and lost vision.
EDS is difficult to diagnose because it affects multiple systems, such as the nervous and/or orthopedic system, skin, joints, blood vessels, and internal organs, and symptoms can vary widely in each patient.
The new clinic will offer more supports for people with EDS by giving their doctors a single point of contact for information on related signs and symptoms, and to get advice from clinical experts on diagnosis and treatment options.
The government says the mandate of the clinic could be expanded to support doctors who are treating people living with other rare diseases, and it will create a working group to look for ways to improve services for them.
Ontario is working with British Columbia and Alberta to develop a national strategy to improve access to pharmaceuticals for rare diseases and address their high costs.
