kaythecurler's picture

kaythecurler

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I didn't ask.

I was recently diagnosed with something I had never heard of!  I was told that it is rare. Now I'm wondering what exactly that means - I didn't think to ask that question.  Does anyone know what percentage of the population have any disease that is described as rare? What othe diseases are described that way?  What I have  isn't anything life threatening or extremely painful but may put limits on what I can easily do if it progresses much. 

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chemgal's picture

chemgal

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How does CORD serve Canadians with Rare Disorders?
1 in 12 Canadians has a rare disorder. Many others are affected or at risk but remain undiagnosed and unaware. CORD provides information to individuals, and links to other rare disorder support groups and organizations from Prince Rupert, British Columbia to St. Johns, Newfoundland.

 

http://www.raredisorders.ca/aboutUs.html

chemgal's picture

chemgal

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As for a list of diseases, there's an alphabetical database that would list some of them.  I'm surprised to see AIDS on there.

https://www.rarediseases.org/rare-disease-information/rare-diseases/view...

 

There are different definitions for rare diseases, but they are usually listed as 1 out of x people having the disease, with x having a huge range.

chemgal's picture

chemgal

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What is an Orphan Disease?
The designation of “orphan disease” varies depending on the respective country,
ranging from a fairly restrictive ratio of 1:9,090 for Australia (or 2,000 affected
individuals) to 1:1,333 (or 200,000 potential patient populations) in the United States.  In
Japan, the prevalence for rare diseases is 1:2,000 (50,000 patients in the population)
and in Europe, the legislation applies to diseases with a prevalence rate of 1:2000
(185,000 patients).  In Canada, there is no official “orphan disease” status but, based on
international standards, could be defined as diseases with a potential patient population
of 3,300 (Australian standards) to 22,500 (US definition).

 

Hopefully you don't mind that I kinda took over, but I was interested to see what it was in Canada.  The above was from a link on the CORD site.

kaythecurler's picture

kaythecurler

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I'm impressed chemgal - though I maybe should have guessed that you might have done some digging around this topic already.  I'm off to explore the info you kindly posted.

chemgal's picture

chemgal

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Hopefully this won't have a big impact on your lifestyle Kay *hugs*

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