Useful Link: Rare Diseases & ? for CurePSP


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Useful Link: Rare Diseases & ? for CurePSP

Postby boxcar9 » Fri Jan 23, 2015 2:26 pm

8)
Following is a link containing some resources that some of us might find helpful in caring for our loved ones:
(I've included this because doctors spend so little time with patients and it's up to us to thoroughly document what is happening)


http://globalgenes.org/toolkits/becomin ... rce-guide/

It is from the Website:
Global Genes Project
http://globalgenes.org/

Cut/pasted from their website:

    According to estimates from the NIH, it will take 10,000 years at the current rate of FDA drug approvals to find therapies for all people suffering from rare diseases.

    While individual rare diseases have small patient populations, collectively the rare disease community is larger than the AIDS and Cancer communities combined.

    Despite its size, the community lacks a unified voice, as only 15% of rare diseases have organizations or foundations providing support or driving research.


This is really mind boggling. If there are so MANY of us, why isn't there MORE being done?

Perhaps because we are isolated into our own little specific groups?

Think about all the people you know: 1 in 10 has a rare disease. People talk about cancer everyday!
Shouldn't rare diseases be talked about everyday too? Shouldn't we all be fighting for action for rare diseases?

I do not see CurePSP listed as part of the Rare Foundation Alliance (on the Global Genes Project website). It seems to me that we ARE part of a larger family and the more exposure we get the better. I do not know anything about their financials, etc. But, I hope that the administration at CurePSP will look into the Rare Alliance Foundation and report on it.

THERE IS STRENGTH IN NUMBERS! :D
Thanks all!
(And thanks CurePSP for funding and driving research efforts!)
boxcar9
 
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