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Author Topic: NORD (National Organization for Rare Disorders) News  (Read 36792 times)

demografx

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NORD (National Organization for Rare Disorders) News
« on: July 01, 2019, 04:19:15 PM »
Here is the July NORD News:

Includes the announcement of NORD’s POIS Research Study Grant! Crowdfunded by the Great Forum Members of POISCenter.com ! (https://tinyurl.com/yxswgv86 )

***NORD is the organization that manages our current (2019-2020) POIS Research - - via a Grant totally funded by us at POISCenter.com***

Complete July News:
http://createsend.com/t/j-2C9ACC0400AC64FD2540EF23F30FEDED
« Last Edit: May 05, 2020, 08:55:26 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: NORD (National Organization for Rare Disorders) News
« Reply #1 on: July 23, 2019, 09:14:46 AM »





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https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/052B60EAEFA550992540EF23F30FEDED/FFA142944D02FA97A29558A201773426
« Last Edit: July 23, 2019, 12:43:06 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: NORD (National Organization for Rare Disorders) News
« Reply #2 on: August 15, 2019, 01:49:26 PM »
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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

Nas

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Re: NORD (National Organization for Rare Disorders) News
« Reply #3 on: August 15, 2019, 01:54:28 PM »
Let's make sure we recruit as many as possible, making this the most relevant research on POIS to date.
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demografx

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Re: NORD (National Organization for Rare Disorders) News
« Reply #4 on: August 15, 2019, 02:16:25 PM »
Nas, thanks for your enthusiasm for the upcoming POIS  Research.
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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: NORD (National Organization for Rare Disorders) News
« Reply #5 on: September 03, 2019, 09:57:03 AM »
NORD is the organization that manages our current POIS Research.

Here is the September NORD News:


Complete September News:
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/C1A37CD9B7C165962540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8

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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

Nas

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Re: NORD (National Organization for Rare Disorders) News
« Reply #6 on: September 03, 2019, 11:14:24 AM »
Any update on the research? It's September already and no news have come out. I'm really worried that the investigation is not going to commence due to the illness not seen as important or due to low funding or other issues. This illness is very self destructive and so incredibly rare that I feel the medical community have an issue identitying it.
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Quantum

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Re: NORD (National Organization for Rare Disorders) News
« Reply #7 on: September 03, 2019, 10:04:25 PM »
Quote from: Nas on September 03, 2019, 11:14:24 AM
Any update on the research? It's September already and no news have come out. I'm really worried that the investigation is not going to commence due to the illness not seen as important or due to low funding or other issues. This illness is very self destructive and so incredibly rare that I feel the medical community have an issue identitying it.


All is going according to estimates... that is, for medical research... everything is very, very slooooooooooow.


Just think about fibromyalgia... which is not at all a rare disease.   It took over a decade just to be recognized.
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demografx

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Re: NORD (National Organization for Rare Disorders) News
« Reply #8 on: September 05, 2019, 10:40:32 AM »
Well said, Quantum! Thank you.
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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: NORD (National Organization for Rare Disorders) News
« Reply #9 on: September 05, 2019, 01:28:31 PM »
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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: NORD (National Organization for Rare Disorders) News
« Reply #10 on: September 05, 2019, 06:49:40 PM »



Includes interactive discussions- -
https://tinyurl.com/y3rh38sf

« Last Edit: September 05, 2019, 07:31:38 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: NORD (National Organization for Rare Disorders) News
« Reply #11 on: September 06, 2019, 01:45:56 PM »
NORD signed the contract for the science to start, so now the researchers are just waiting on the first money to be deposited to order equipment for the POIS study.
« Last Edit: September 06, 2019, 08:45:30 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: NORD (National Organization for Rare Disorders) News
« Reply #12 on: September 19, 2019, 05:27:20 PM »
“Innovative Data and Analytics Platform to Accelerate Drug Development for Rare Diseases”
September 19, 2019

https://rarediseases.org/innovative-data-and-analytics-platform-to-accelerate-drug-development-for-rare-diseases/
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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: NORD (National Organization for Rare Disorders) News
« Reply #13 on: October 01, 2019, 05:58:52 PM »
***NORD is the organization that manages our current (2019-2020)
POIS Research - - via a Grant totally funded by us at POISCenter.com***



Here is the October NORD News:


Complete October News:
https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/89E98EE7F8EF84992540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
« Last Edit: October 01, 2019, 08:11:19 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: NORD (National Organization for Rare Disorders) News
« Reply #14 on: October 17, 2019, 03:39:12 PM »
 
Keynote with Alex Azar, Secretary of Health and Human Services,




Just Added
to
The NORD Rare Diseases & Orphan Products Breakthrough Summit
October 21-22 Washington, D.C.
https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/D25F88ACCA17A7372540EF23F30FEDED/FFA142944D02FA97A29558A201773426
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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: NORD (National Organization for Rare Disorders) News
« Reply #15 on: October 23, 2019, 04:31:30 PM »
“2019 NORD Summit Breaks Records with Largest Attendance Ever and Historic Keynote!”

I think good news for NORD is good news for POIS
Demo
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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

drop247

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Re: NORD (National Organization for Rare Disorders) News
« Reply #16 on: October 23, 2019, 06:02:23 PM »
Is there a list of what organizations or doctors are currently studying POIS, if any? Do we have something to look forward to? I know you guys raised a lot of money for research. Is that still ongoing?
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demografx

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Re: NORD (National Organization for Rare Disorders) News
« Reply #17 on: October 23, 2019, 08:40:54 PM »
Yes, Quantum put together a list.

We raised about $35,000 - - all from POISCenter forum members - - for POIS research. POIS scientific research is currently underway
https://poiscenter.com/forums/index.php?topic=3006.0
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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

Quantum

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Re: NORD (National Organization for Rare Disorders) News
« Reply #18 on: October 23, 2019, 09:58:27 PM »
Quote from: drop247 on October 23, 2019, 06:02:23 PM
Is there a list of what organizations or doctors are currently studying POIS, if any? Do we have something to look forward to? I know you guys raised a lot of money for research. Is that still ongoing?

Hi drop, my POIS Doctors list can be found here:   http://poiscenter.com/forums/index.php?topic=2575.msg22338#msg22338 
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demografx

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Re: NORD (National Organization for Rare Disorders) News
« Reply #19 on: October 25, 2019, 06:49:50 PM »
Great Research News!

From:        Dr. Nicole Prause
cc:             Dr. Tierney Lorenz
Subject:    Scientists, start your engines!


Hi Demo,

We officially have the grant funds in the accounts to spend them! I've started prepping my lab space and will begin equipment orders. I now need to hire the research assistant and do a bunch of testing, so do not expect enrollment for at least another month, but we are officially green-lit...totally...finally. :)

Thank you for your patience and have a good weekend!

Nicole Prause, Ph.D.

« Last Edit: October 25, 2019, 09:00:18 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
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