Author Topic: NORD (National Organization for Rare Disorders) News  (Read 12690 times)

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #60 on: August 03, 2020, 12:07:56 PM »

August 2020 NORD News
https://tinyurl.com/y5vxz7c7

(NORD is the supervising organization for the POIS Research Team)
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #61 on: August 29, 2020, 07:19:37 AM »


https://rarediseases.org/summit-event-details-2/




(NORD is the supervising organization for
our 2020-2021 POIS Research Team)
https://tinyurl.com/yxt2shaq
« Last Edit: December 11, 2020, 01:04:00 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #62 on: September 01, 2020, 03:16:59 PM »

September 2020 NORD News
https://tinyurl.com/yyd5ongu


(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
« Last Edit: September 02, 2020, 12:11:31 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #63 on: October 01, 2020, 02:12:30 PM »


October 2020 NORD News
https://tinyurl.com/y26qpt5b


(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
« Last Edit: October 01, 2020, 02:23:25 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #64 on: October 01, 2020, 02:19:45 PM »



October 8-9,
https://rarediseases.org/2020-summit-agenda/






(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
« Last Edit: October 06, 2020, 05:48:53 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #65 on: October 06, 2020, 05:26:11 PM »
“Last Chance to Register for the 2020 NORD Summit”
https://tinyurl.com/y3ol3xe7



     Days          Hours       Minutes     Seconds






(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
« Last Edit: October 06, 2020, 06:05:57 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

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #66 on: October 06, 2020, 06:40:04 PM »
Some people (but very few) here wonder why we don’t just crowdfund donation$ and then hire our own POIS researcher instead of using an intermediary like NORD? One answer is that NORD does all the accounting/bookkeeping/$$$ fundraising donor collection, organization and disbursement of funds, a mini-nightmare for a small group like ours. Then they do massive promotion to a huge international database and PR network to screen for and find medically-qualified-for-POIS researchers. Then, lending great CREDIBILITY to the process (for donors & researchers alike) with a very well-known and highly respected name in the field of medical research of rare disorders, e.g., NORD.

And to me, one of the most critical factors is having an “oversight” team like NORD’s MAC (see below), virtually impossible to assemble all alone by a small group such as ours.

:) 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 POIS research progress & 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 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 Dr med
Associate Professor for Metabolic Diseases
University of Zurich
Head, Division of Metabolics
Children’s Hospital Zurich

Preston W. Campbell, III, MD
President and Chief Executive Officer
Associate Professor of Pediatrics
Johns Hopkins Cystic Fibrosis Center

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, MB, ChB
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 and Professor 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
VP, Medical Director
Scientific Services
TRIO, an FCB Health Network Company

Susan Winter, MD
Clinical Professor, Pediatrics, UCSF
Clinical Geneticist, Genetic Medicine and Metabolism, Valley Children’s Hospital

Doris T. Zallen, PhD
Professor Emerita of Science and Technology
Studies and Humanities
Virginia Tech University
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #67 on: November 02, 2020, 12:05:20 PM »


November 2020 NORD news
https://tinyurl.com/y6rbpsat



(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
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

Spartak

  • Jr. Member
  • **
  • Posts: 95
Re: NORD (National Organization for Rare Disorders) News
« Reply #68 on: November 04, 2020, 06:21:55 PM »
Sorry Demo, English is not my native tongue, are news good or bad?
no sugar diet helps me a tiny bit, also makes my mind much calmer in general. Sugar is definitely something my body does not handle well. Also I noticed that other inflammations like a hangover are better since I quit sugar. I avoid sweet fruits as well.

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #69 on: November 04, 2020, 08:32:28 PM »
Spartak, not bad/not good, only about NORD programs & services.
« Last Edit: November 04, 2020, 10:35:58 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #70 on: December 02, 2020, 03:34:36 PM »

from NORD to everyone who generously donated to the POIS Research Study 2020-2021!
« Last Edit: December 02, 2020, 05:13:32 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #71 on: December 09, 2020, 03:20:18 PM »



December 2020 NORD news
https://tinyurl.com/yxcujcb4



(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #72 on: December 11, 2020, 12:49:17 AM »

   


NORD Webinar Series

NORD hosts monthly webinars on the odd-numbered months. We feature topics frequently requested by members. In addition to these regularly scheduled webinars, there are occasionally special webinars added to the schedule with an important topic and/or guest.


Have a suggestion for a NORD webinar? Let me know via PM (private message)

Your suggestion, to maximize the likelihood of NORD approval, should appeal to a broad base of rare-disorder sufferers, not just POISers.

Example of past topics for NORD webinars:

• About NORD
• Fundraising
• Free Promotion of Your Events and Disease
• The Cost of Rare Disease Drugs
• Grant Writing for Rare Disorders



(NORD is the supervising organization for
our 2020-2021 POIS Research Study:
https://tinyurl.com/yyfmdl2e )




NORD:
http://rarediseases.org
« Last Edit: December 11, 2020, 08:09:47 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

Aladin

  • Jr. Member
  • **
  • Posts: 92
Re: NORD (National Organization for Rare Disorders) News
« Reply #73 on: December 11, 2020, 12:18:23 PM »
so, did they reach a sufficient number of candidates to conduct the study?

demografx

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #74 on: December 11, 2020, 06:06:56 PM »

so, did they reach a sufficient number of candidates to conduct the [POIS Research Study 2020-2021]?


Recruiting is on hold for COVID restrictions in L.A.
« Last Edit: December 12, 2020, 02:09:47 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #75 on: January 04, 2021, 06:07:42 PM »


January 2021 NORD news
https://tinyurl.com/y3l3mfnd



(NORD - National Organization for Rare Disorders) is the supervising organization for our 2020-2021 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )

« Last Edit: January 04, 2021, 09:47:14 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #76 on: January 05, 2021, 07:08:52 AM »


https://tinyurl.com/y5las5wv



(NORD - National Organization for Rare Disorders) is the supervising organization for our 2020-2021 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )

« Last Edit: January 05, 2021, 07:12:56 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #77 on: January 05, 2021, 01:31:07 PM »



 
COVID-19 Vaccines Update: FDA and CDC Leaders Address the Rare Disease Community
Date:
January 15, 2021
Time:
2:00 - 2:45pm ET

https://tinyurl.com/yyh8cwff




(NORD - National Organization for Rare Disorders) is the supervising organization for our 2020-2021 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )
« Last Edit: January 06, 2021, 11:23:15 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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #78 on: January 09, 2021, 02:05:37 AM »

Ready To Share Your POIS Experiences With The Rare Community?

JUNE 26-27, 2021 | VIRTUAL

The Living Rare Forum is a NORD two-day virtual event filled with learning, networking and fun for rare patients and families. As we build the agenda we are looking for impactful speakers who are passionate about empowering the rare disease community to share their insights.

Apply To Be A Speaker

https://tinyurl.com/y2ywsx5w




(NORD - National Organization for Rare Disorders) is the supervising organization for our 2020-2021 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )
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

  • Administrator
  • Hero Member
  • *****
  • Posts: 5631
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #79 on: February 01, 2021, 04:59:15 PM »


February 2021 NORD news:
http://tinyurl.com/4nfuosdn



(NORD - National Organization for Rare Disorders) is the supervising organization for our 2020-2021 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )
« Last Edit: February 01, 2021, 07:03:59 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