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Your Letter

Subject: Treat Rare Diseases

Dear [MPP's Name],

I am writing to you as a constituent and resident of Ontario, and as someone touched by a rare disease. I am concerned that while Ontario government claims to be a leader in the health sector, those with rare diseases are left behind.

Defined as a disease affecting fewer than 1 in 2,000 people, -an estimated 1 in 12 Canadians are actually impacted by rare disease, either as a patient, family member, caregiver or friend.

With over 7,000 rare diseases known and more being discovered every year, rare disease diagnosis and treatment affects a significant portion of our health system. What hasn’t changed is the way we incorporate rare disease into the provincial health system.

Currently, those with a rare disease must seek treatments the same way any Ontarian would – under the existing system, using OHIP and public drug programs. However, there is little flexibility under either of these programs for rare disease. Patients are often left to seek – and pay for - surgical treatments outside of the province and Canada because we do not have the expertise in Ontario, or plead for access to drugs that aren’t readily available in Canada or covered by our OHIP program

My message is simple: there is a proven need for a system that works. Rare disease patients, their families and their caregivers all deserve a health system that serves their needs as well.

Ontarians affected by rare diseases simply do not have time to wait and shouldn’t continue to be forced to plead to its government for life-saving medication or treatments. I am asking for the opportunity to meet with you to discuss the urgent need to review the system to ensure no patient in Ontario will have to suffer waiting for necessary treatment.

Thank you for your consideration, and I look forward to your reply.


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