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Author Topic: Our New RFP ( Request For Proposal) for the new study is out !  (Read 105039 times)

certainlypois2

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #20 on: June 17, 2017, 04:24:08 PM »
do we know how many have submitted as of now
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demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #21 on: June 17, 2017, 05:58:34 PM »
Hi, CP2, no they won't say till the 24th or so.
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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

FloppyBanana

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #22 on: June 24, 2017, 03:16:20 AM »
Quote from: demografx on May 15, 2017, 06:27:38 PM
Cross-posted



A new $14million fund FOR (future) POIS - and other rare disorders - MEDS/PHARMACEUTICALS/TREATMENTS!

https://globalgenes.org/raredaily/fda-sets-up-new-rare-disease-research-fund/

Hi there it's been a while since I have been on here. Has anyone linked in with this organisation?
Thanks FB
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30 years of POIS. Mytelase after O with Iceman breathing technique.

Habibou

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #23 on: September 17, 2017, 08:09:50 AM »
Do we have any news regarding a possible research for our condition?
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MirkoThiel0

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #24 on: November 03, 2017, 10:39:50 AM »
same question then the one above me :)
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Quantum

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #25 on: November 04, 2017, 01:31:30 PM »
Hi Mirko,

For the most recent news about POIS research, bookmark that board: http://poiscenter.com/forums/index.php?board=22.0

Currently, first post on the board will tell you about latest news, that is, our new RFP is up on NORD'S website, and has no deadline, so will stay active till our $31000 grant will be awarded to a research team for a new POIS study.

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You are 100% responsible for what you do with anything I post on this forum and of any consequence it could have for you.  Forum rule: ""Do not use POISCenter as a substitute for, or to give, medical advice" Read the remaining part at http://poiscenter.com/forums/index.php?topic=1.msg10259#msg10259

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #26 on: November 05, 2017, 02:04:57 AM »
Thanks, Quantum!
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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

MirkoThiel0

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #27 on: November 05, 2017, 06:02:19 AM »
Quote from: Quantum on November 04, 2017, 01:31:30 PM
Hi Mirko,

For the most recent news about POIS research, bookmark that board: http://poiscenter.com/forums/index.php?board=22.0

Currently, first post on the board will tell you about latest news, that is, our new RFP is up on NORD'S website, and has no deadline, so will stay active till our $31000 grant will be awarded to a research team for a new POIS study.


Thank you Quantum.
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demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #28 on: February 08, 2018, 10:37:17 AM »
POTENTIAL POIS RESEARCHERS/SCIENTISTS RECEIVED THIS EMAIL TODAY - -
Demo

emphasis mine -

NORD Research Grants

*NORD has reopened the call to submit abstracts and letters of intent for the following grants. The deadline is ongoing and all U.S. and international researchers interested in studying these diseases are encouraged to consider applying. For questions related to these grants, email research@rarediseases.org.*

Cat Eye Syndrome – One (1) grant of up to $30,000 for scientific and/or clinical research studies related to Cat Eye Syndrome. Download RFP.

Malonic Aciduria – One (1) grant of up to $50,000 for scientific and/or clinical research studies related to Malonic Aciduria. Download RFP.

Post-Orgasmic Illness Syndrome – One (1) grant of up to $31,000 for scientific and/or clinical research studies related to Post-Orgasmic Illness Syndrome (POIS). Download RFP.
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx


« Last Edit: February 08, 2018, 01:17:34 PM by demografx »
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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

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #29 on: February 08, 2018, 10:43:45 AM »
Everyone: please feel free to send the above to any doctor or organization you feel is qualified. That is how we found our last researcher: WE made the initial contact.

I believe that our chances are improved greatly when the researcher knows who we (POISCenter) are *in advance* of their submitting a proposal to NORD.

Best,
Demo
« Last Edit: February 08, 2018, 03:19:36 PM by demografx »
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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

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #30 on: February 08, 2018, 11:58:04 AM »

Applications will be accepted on a rolling basis until the funding has been awarded.
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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

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #31 on: February 26, 2018, 10:17:43 AM »
IMPORTANT: Finding our POIS Researcher

As you all know,  the NORD award to a POIS research team (up to $31,000 that POISCenter Members donated) has been sluggishly delayed.

Looking back at our historical success in finding someone to research POIS, I believe that our last research project was influenced by our *early* (pre-award) discussions with Dr K.

I think we all played a role in Dr K’s decision to take us on. He was responding to NORD because he *already* knew us and POIS matched his research goals.

So...I think that a PERSONAL MEMBER effort between POISCenter & researchers is invaluable, perhaps even indispensable in our early careers here to annihilate the still misunderstood POIS.

In conclusion, NORD says “it would be wonderful to have [POISCenter] forum members share the RFP information with their doctors and other relevant contacts.”

============================================================
Therefore...*please* send this link below to a doctor you trust and/or to a researcher you can contact who you think would be a good candidate to study POIS:

RFP: (NORD’s Request for Proposal)

https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

Many thanks and best wishes to us all!
demo





« Last Edit: February 27, 2018, 03:51:13 PM by demografx »
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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

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #32 on: February 28, 2018, 12:22:30 AM »
One example (mine) of how we can distribute the NORD Request for Proposal:


On Feb 27, 2018, at 2:13 PM, demografx wrote:

Dear Dr G, [my own large-city university-endocrinologist]

I hope you’re well.

I continue to benefit greatly from your treatment plan that I implemented with you about 8 years ago.

Perhaps you can help us with furthering the research on Post-Orgasmic Illness Syndrome?

I’ve attached a $31,000 grant description which I would hope you can pass along to your colleagues.

Best wishes,

demografx
https://rarediseases.org/wp-content/uploads/2014/11/NORD_RFP_POIS.docx

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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

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #33 on: February 28, 2018, 09:10:45 PM »

Observer made an excellent suggestion:

Dr Goldmeier in London.

I think 1-2 forum members visited him.


« Last Edit: March 01, 2018, 12:53:07 PM by demografx »
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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

POISse

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #34 on: March 02, 2018, 09:00:15 PM »
I visited Dr Goldmeier last week. He knows about pois, he has seen some other pois sufferer and he is aware of the current research (he mentioned Dr W, Dr K and the Chinese study). Nevertheless he felt a bit helpless and he suggested that I see an immunologist.
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demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #35 on: March 03, 2018, 08:17:33 PM »
Thank you, POISse!
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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

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #36 on: March 07, 2018, 03:00:48 PM »
Hi everyone.

Any thoughts about sending out an email to your doc and/or researcher to expedite finding our next POIS consultant?
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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

mellivora

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #37 on: March 08, 2018, 03:33:24 PM »
Likewise I have visited Dr Goldmeier some years ago. Very nice chap. We tried a couple of things but in the end he was at a bit of a loss how to move forward I'm afraid.
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demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #38 on: March 08, 2018, 06:02:20 PM »
mellivora, thanks for sharing that!
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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

Meshal

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #39 on: March 20, 2018, 11:01:05 AM »
I'm not sure but from what I understand is that so far members here have donated 31,000$, btw huge appreciation for you guys for doing this, I just found out really haha, I can't express my gratitude. as soon as I manage my POIS I'll be able to collect my money since It's easy to gather dirty money In my country :P 
 
and RFP means that NORD is looking for a research team of a doctor to research about POIS using the 31,000$ the members have donated. Is that correct?

I already prepared a an email to a lot of doctors in my country based on my though above. am I making sense?
« Last Edit: March 20, 2018, 11:03:09 AM by Meshal »
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