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Support announced for rare blood disease sufferes

By Isabel Jordan – July 27, 2011
OfflineIsabel Jordan

The Vancouver Sun on July 23rd reports on some good news for those suffering from Paroxysmal nocturnal haemoglobinuria (PNH)

Canadians suffering from a fatal and ultra-rare blood disease are elated the governemtn has decided to pay for the life-saving drug they need. Read more on the Vancouver Sun website.

 

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Isabel Jordan

I'm the mom of two children; my oldest has been diagnosed with a ultra-rare or unique disorder. I've always done a lot of volunteer work at a variety of non-profit groups and right now I'm co-chair…

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July 27, 2011
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Isabel Jordan

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Rare Disease Foundation and rare disease in the media.

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