Dear politicians

About 1 in 12 people (nearly 3 million Canadians) have a rare disease. These Canadians range from young and old, men and women, adults and children. They face many challenges such as being misdiagnosed and lack of treatment options.

Osteogenesis Imperfecta is amongst these rare diseases. This condition affects about 6 or 7 per 100 000 people worldwide. Osteogenesis Imperfecta is a rare bone disorder that causes weak bones. There are many types, the most common being type one. 

OI type one can be caused by alterations in the COL1A1 or COL1A2 genes (thanks to the OI & rare disease websites for sharing this information). These genetic changes cause a reduction in the amount of normal type one collagen made in the body, thus producing weak bones. 

OI doesn’t “go away”. Fortunately, although it’s incurable there are pain management/treatment options such as pain medication, physical therapy, proper care for broken bones & brittle teeth, etc. 

I guess what I’m trying to say is rare disease patients deserve a voice. They deserve a chance. They need funding and awareness. 

Let’s take childhood cancer for example. Only 4% of ALL cancer research funding goes to childhood cancer. So many children are diagnosed with a variety of cancers including rare forms, yet their fate depends on 4%. 

What if your own was diagnosed with a rare disease, disorder or cancer? What if you had no treatment options, or no way out for your child, friend or relative?

Would you still think their life is only worth a single digit, such as 4%?


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