Ontario to open clinic for rare Ehlers-Danlos syndrome

February 29, 2016

The Toronto Star

On the rarest day of the calendar, Ontario is taking action on a rare disease. Health Minister Eric Hoskins on Monday announced a new clinic for Ehlers-Danlos Syndrome (EDS).

Progressive Conservative MPP Michael Harris (Kitchener-Conestoga), who long advocated for the families with rare diseases, is introducing legislation for the last day of February to be recognized as Rare Disease Day.

Ontario to create clinic to help people with EDS, other rare diseases

February 29, 2016

680 News

Ontario will set up a new clinic to help diagnose and treat people with Ehlers-Danlos Syndrome, or EDS, and it could expand to help patients with other rare diseases…Progressive Conservative MPP Michael Harris, who has a private member’s bill to get more help for people with rare diseases, says too often they [rare disease patients] suffer in isolation without the resources available to people with more commonly diagnosed diseases.

MPP pushes for better care for those afflicted with rare diseases

February 25, 2016

Woolwich Observer

Can you imagine having to travel across the country just to have surgery? What about having to take out thousands of dollars in loans to pay for medication and medical equipment?

This is the reality of hundreds of Ontarians with rare diseases. Kitchener-Conestoga MPP Michael Harris wants it to stop.

D’Amato: Any of us might get seriously ill. Will treatment be there?

February 25, 2016

Waterloo Region Record

Of course governments are concerned about rising costs of drugs and treatments. But people living in Ontario should have the right to feel secure that they have decent health care, no matter how bad their luck might be…It’s a good idea and it deserves the support of all parties.

My rare disease left me forgotten: Sudbury woman

February 19, 2016

Sudbury Northern Life

If Danette Hillier could describe her life with one word, it would be “forgotten.”

After her daughter was born in February 2007, Hillier started to experience constant and intense pain, and had trouble sleeping even a few hours without waking up regularly. The next year her condition deteriorated to the point she had to quit her job as a geologist.

Campaigning for provincial help in treating rare diseases (video)

February 19, 2016

CTV Kitchener

People and families who suffer from rare diseases are looking for some help from the province. For those battling rare diseases treatment isn’t straightforward and often costs a lot of money out of pocket, especially in Ontario.

Campaign to treat rare diseases hits Hamilton

February 10, 2016

Hamilton Spectator

Jessica Fournier finally has a spark of hope. Maybe someday, something can be done about her seven-year-old son Thomas’ Dravet Syndrome, a severe form of epilepsy. Fournier was among 46 people with rare disease experience who met in Hamilton Tuesday with Kitchener-Conestoga Progressive Conservative MPP Michael Harris — who is touring Ontario with his fight for provincial funding for rare diseases treatments.

Rare Disease Treatment

February 9, 2016

CTV Northern Ontario

Coverage from #TreatRareDisease Roundtable in Sudbury.

MPP calls for panel to help treat northerners with rare diseases

February 9, 2016

CBC News & Radio

There appears to be some political will to get help for northern Ontarians dealing with rare diseases affecting their health following a roundtable discussion Monday in Sudbury. Kitchener-Conestoga MPP Michael Harris says ‘there’s clearly a problem within the system’ if people are forced to travel long distances for health care.

MPP wants to keep patients from falling through the cracks

February 9, 2016


People living with rare diseases often lack of support and access to treatment, says Michael Harris
If you’ve never heard of atypical hemolytic-uremic syndrome, or phenylketonuria, you’re probably not alone. Both are rare diseases that only affect a small fraction of Ontarians.


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