The Sovereign Mind

Free thought on politics and real life

Rare Disease Day 2009

with one comment

Saturday, February 28th, is Rare Disease Day 2009. Some might wonder why we need a day to recognize rare diseases. I would have wondered the same thing myself about two years ago. But as a parent of a child with Eosinophilic Esophagitis, I now understand that patients with rare diseases face a unique challenge. For more common diseases, research and investment dollars are much easier to come by. This is for good reason, because each dollar carries more bang for the buck because of the economy of scale. If you could help save 1000 kids for the same amount of money as it would take to save 1, which would you choose?

Last year American Express hosted a competition, of sorts, between charitable initiatives. The idea was to have people present ideas that needed funding, and then narrow it down to 25, based partially on public voting. The project named “EE – Save Sick Children”, aimed to raise money for APFED, finished second in the overall vote count. However, American Express decided to exclude the project from the final 25 projects. Am I angry about that? No. I don’t really blame them. I don’t know that the project was really more deserving than other projects. Still, this illustrates the difficulty those with rare diseases have in getting the research attention needed to help them.

It’s important that our society does not forget about those of us who have the double-challenge of not only having a chronic disease, but one that is not well known, understood, or researched. That is why I’m grateful that organizations like The National Organization for Rare Disorders have fought for people like me long before I knew I would care. Please watch this video and take a moment this Saturday to think how you can help those who are sick for no fault of their own, especially those struggling not only with their disease, but fighting a lonely battle:

Thanks to The Moderate Voice for bring this day to my attention.

Cross posted to DaddEE


Written by Mike

February 25, 2009 at 10:32 pm

One Response

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  1. Best of luck to you and yours. There’s a growing community of us who can relate to these special challenges. The more we coalesce our voice, the more we’ll be heard.

    Pete Abel

    February 26, 2009 at 7:05 am

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