Author Topic: NORD Research Donation Direct On-Line Link  (Read 9480 times)

Daveman

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NORD Research Donation Direct On-Line Link
« on: July 06, 2011, 08:02:58 PM »
The direct link to the NORD On-Line International Donations page is:

https://rarediseases.org/about/support/research-donations/fg_base_view_p3

In the spot for "Research Fund," hit "Please Select a Research Fund."  It's an alphabetical drop down -- go to P and find your fund.


WITHOUT RESEARCH THERE WILL BE NO CURE!
Sessions 5 to 9 days, mostly Flu-like, joints, digestion problems, light cognitive.
Niacin has changed my lif though, now 1 day MAX.
Somewhere in this interaction with Niacin is the answer!

demografx

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Re: NORD Research Donation Direct On-Line Link
« Reply #1 on: July 23, 2012, 03:15:06 PM »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Pianist

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Re: NORD Research Donation Direct On-Line Link
« Reply #2 on: January 09, 2015, 11:46:40 AM »
Tell, somebody knows when research ends, approximately, who as thinks? This year or not (assumptions)?
By the way, I here read recently that there is Gates's fund, and this fund allocates huge money for development of condoms of "new generation". And so, to what I it, can send the letter to this Gates and ask that he "found" a little money for studying of POIS? To it it isn't difficult, at it there is a lot of money. Here people suffer, and he wastes money!

Stef

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Re: NORD Research Donation Direct On-Line Link
« Reply #3 on: January 09, 2015, 01:34:33 PM »
Hello Pianist,

Dr. Komisaruk's study is for one year.  He had some normal delays in getting the Rutgers IRB approval and we don't know the exact start date of this study. So, we don't know when the year will be up. He'll be able to obtain extensions if needed.

Sorry I can't be more specific in answering this question.

Re: Bill Gates Foundation -- those grants are global in nature, affecting large populations (i.e. HIV prevention, which is the reason he's awarded funds for improved condoms), and are mostly geared toward developing countries. Also, the organizations that apply must have their own staff to carry out the research. For these reasons, the Gates Foundation grants wouldn't be appropriate for POIS research at this time.

I know this is disappointing (about the Gates Foundation) -- but there are other more realistic foundations to check out. The difficulty as I see it, at this point, is that no one knows what POIS is, making a choice of research very difficult at this point.

Best wishes,
Stef



 





« Last Edit: January 09, 2015, 04:55:54 PM by Stef »