Author Topic: Our New RFP ( Request For Proposal) for the new study is out !  (Read 43914 times)

Quantum

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Hi everyone, good news,

Stef just let us know that our new RFP by NORD for the upcoming new study is out !

Here is the direct link to the document:
 https://rarediseases.org/wp-content/uploads/2017/04/NORD_RFP2017_POIS.docx 


Here is the link to the page where it is listed with the other RFP by NORD for April 2017 :
 https://rarediseases.org/for-clinicians-and-researchers/research-opportunities/requests-proposals/


You are free and welcome to transmit this RFP to any MD or researcher or clinic you think would be appropriate and could be interested.


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 #1 on: April 26, 2017, 02:47:25 PM »
This is NORD's Summary Description of our new Grant:




For more detail please see Quantum's opening post:
his first link above.


« Last Edit: May 02, 2017, 02:04:38 AM by demografx »
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 #2 on: April 27, 2017, 06:41:39 PM »
This went out by email to everyone (including medical researchers!) who subscribes to "POIS Google Alerts". Here's how you can subscribe, too:
http://www.basiccomputerinformation.ca/create-google-alert/





"Full Coverage" link mentioned above:

http://www.prnewswire.com/news-releases/research-grants-available-for-rare-diseases-from-national-organization-for-rare-disorders-nord-300445649.html

« Last Edit: May 01, 2017, 07:21:57 PM by demografx »
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

ThisType

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #3 on: April 27, 2017, 08:48:40 PM »
That's great news!  Do you know if further donations will still go to this RFP or if they would be in reserve for a future RFP?
thanks!

demografx

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Re: Our New RFP ( Request For Proposal) for the new study is out !
« Reply #4 on: April 28, 2017, 12:30:38 PM »



That's great news! 



Do you know if further donations will

still go to this RFP or if they would be in reserve for a

future RFP?


thanks!


Future RFP.

Thanks, ThisType.

Good question!


« Last Edit: May 01, 2017, 07:22:59 PM by demografx »
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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« Last Edit: April 29, 2017, 03:46:37 PM by demografx »
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 #6 on: April 28, 2017, 10:42:09 PM »


Stef just let us know that our new RFP by NORD for the upcoming new study is out !


Many thanks, Stef!


Best,
Demo



« Last Edit: April 30, 2017, 06:26:56 AM by demografx »
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 #7 on: April 29, 2017, 12:41:03 AM »







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 #8 on: April 29, 2017, 12:42:37 AM »

Here is some additional *major*

media-outlet NORD Grant publicity,

which might further attract even

more superb and

qualitatively superior POIS

medical researchers!


















« Last Edit: May 01, 2017, 07:06:13 PM by demografx »
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 #9 on: April 29, 2017, 04:31:58 PM »



We're not alone!















« Last Edit: May 06, 2017, 11:26:38 AM by demografx »
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 #10 on: April 29, 2017, 04:47:39 PM »


Congratulations on our new NORD Grant

attainment -- to all of us POISers...



                 everywhere!




Forum Member Concentration Approximation. Map
developed and created by POISCenter's
AdminRareDisease "Mat780"




Best wishes to Us All!
Demo



« Last Edit: June 23, 2017, 11:21:01 PM by demografx »
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 #11 on: April 30, 2017, 06:09:25 AM »
:) MAC FAQ :)

Q. Who evaluates all of the POIS Grant proposals for NORD (our Grant administrator) and who does the final award/selection of our Researcher/PI (Principal Investigator)? And who monitors/sends us periodic updates?

A. NORD's Scientific and Medical Advisory Committee (also known as "MAC") -- does all of the above.

The NORD MAC ( Medical Advisory Committee ) is comprised of physician/researchers who share their experience and expertise on behalf of patients and families affected by POIS. They are:

Marshall L. Summar, MD, Chair, NORD Strategic Advisory Committee
Division Chief, Genetics and Metabolism
Margaret O’Malley Chair of Molecular Genetics
Children’s National Medical Center
Professor, Pediatrics, George Washington
University School of Medicine and Health Sciences

Frederick Askari, MD, PhD
Associate Professor, Hepatology
Division of Gastroenterology
Director, Wilson Disease Program
University of Michigan Health System

Matthias Baumgartner, Prof DrMed
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich

Garrett E. Bergman, MD
Senior Director, Medical Affairs
Kedrion USA

Preston W. Campbell, III, MD
Executive Vice President for Medical Affairs
Cystic Fibrosis Foundation
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center

Robert M. Campbell, Jr., MD
Division of Orthopaedics
Director, Center for Thoracic Insufficiency
Syndrome
Children’s Hospital of Philadelphia

Harry (Hal) Dietz, MD
Victor A. McKusick Professor of Genetics
and Medicine
Investigator, Howard Hughes Medical Institute
Johns Hopkins University School of Medicine
McKusick-Nathans Institute of Genetic Medicine

Gregory M. Enns, MD
Associate Professor of Pediatrics (Genetics)
Lucile Packard Children’s Hospital
Associate Professor – Med Center Line,
Pediatrics – Medical Genetics
Member, Child Health Research Institute
Stanford University School of Medicine

Marlene Haffner, MD, MPH
President and CEO
Haffner Associates, LLC

James E. Heubi, MD
Director, Clinical Translational Research Center
Co-Director, Center for Clinical and
Translational Science and Training
Associate Dean, Clinical and Translational
Research
Professor, Department of Pediatrics
Cincinnati Children’s Hospital Medical Center

James F. Leckman, MD
Neison Harris Professor of Child Psychiatry
Psychiatry, Psychology and Pediatrics
Yale Child Study Center
Yale School of Medicine

Brendan Lee, MD, PhD
Robert and Janice McNair Endowed Chair in
Molecular and Human Genetics
Professor of Molecular and Human Genetics
Baylor College of Medicine
Investigator, Howard Hughes Medical Institute

James E. Lock, MD
Cardiologist-in-Chief
Boston Children’s Hospital
Alexander S. Nadas Professor of Pediatrics
Harvard Medical School

Mary Jean Sawey, PhD
Senior Vice President, Medical Director
ICC LOWE Inc.

Susan Winter, MD
Medical Director, Genetics and Metabolism
Children’s Hospital Central California

Doris T. Zallen, PhD
Professor of Science and Technology
Studies and Humanities
Virginia Tech University
« Last Edit: October 26, 2018, 07:11:56 PM by demografx »
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 #12 on: May 01, 2017, 12:55:40 PM »
Everyone: post freely here (and at other threads).

The more we post about our Grant, the more it gets picked up and transmitted by Google's search engines.

Google search result/Listing Example (just today):

It's picked up from the 3rd & 4th paragraph down below.


And this will thus hopefully get into the hands of..."the perfect Dr. POIS". Who in turn will possibly submit a Researcher
(PI -- or -- Principal Investigator) application for the POIS Grant!
 
Let's let the  w o r l d  know that we wish to conquer this ugly, horrible syndrome that we all have.

Let's help NORD find the perfect "Dr. POIS".

On a budget.

We're good at that.

I'm not asking you all to do anything new! You've already done a GREAT job in building this POISCenter Powerhouse. And gone through a lot of pain to get to this place in our "career".

So...just keep up the good work :)


« Last Edit: June 23, 2017, 10:51:07 PM by demografx »
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 #13 on: May 02, 2017, 01:52:41 AM »
Re-posted today with *new* how-to-subscribe information

This went out by email to everyone (including medical researchers!) who

subscribes to "POIS Google Alerts". Here's how you can

subscribe, too:


http://www.basiccomputerinformation.ca/create-google-alert/

"Full Coverage" link mentioned above:
http://www.prnewswire.com/news-releases/research-grants-available-for-rare-diseases-from-national-organization-for-rare-disorders-nord-300445649.html

« Last Edit: May 06, 2017, 04:04:19 AM by demografx »
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 #14 on: May 02, 2017, 11:16:19 AM »
Congratulations on our new NORD Grant attainment -- to all of us POISers everywhere!
FROM PREVIOUS PAGE: Forum Member Concentration Approximation. Map developed and created by POISCenter's AdminRareDisease "Mat780"  Best wishes to Us All! Demo
-------------------------------------------------------------------------------------------



I didn't want our •ASIAN...and •Australia/New Zealand-area (the latter from where our POIS TV documentary originated) great POISer friends to feel left out of this Approximation Chart also developed by "Mat780" :)

« Last Edit: May 08, 2017, 02:09:20 AM by demografx »
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