Post Orgasmic Illness Syndrome (P.O.I.S.)

General Category => POIS Research => Topic started by: demografx on July 01, 2019, 04:19:15 PM

Title: NORD (National Organization for Rare Disorders) News
Post by: demografx 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
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on July 23, 2019, 09:14:46 AM
(https://rarediseases.org/wp-content/uploads/2014/11/webinar.image_-e1434556991536.png)




How can you be a better advocate for yourself in a healthcare setting? Are you curious about how care coordination fits into a successful treatment plan?
 
We will cover these topics and more in tomorrow's free webinar. Join us as our speakers explain self-advocacy and how you can develop skills to become a more effective self-advocate.We will also discuss using advocacy skills to coordinate care and how care coordination can influence outcomes for patients.
 
This webinar is perfect for patients, caregivers and advocates.
Register for the FREE Webinar
Tomorrow, Wednesday, July 24
2:00p.m. - 3:00p.m. EDT

https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/052B60EAEFA550992540EF23F30FEDED/FFA142944D02FA97A29558A201773426
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on August 15, 2019, 01:49:26 PM

Here is the August NORD News:


Complete August News:
https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/EF9A7E6F9BD6995E2540EF23F30FEDED
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Nas 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.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on August 15, 2019, 02:16:25 PM
Nas, thanks for your enthusiasm for the upcoming POIS  Research.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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

Title: Re: NORD (National Organization for Rare Disorders) News
Post by: 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.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Quantum on September 03, 2019, 10:04:25 PM
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.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on September 05, 2019, 10:40:32 AM
Well said, Quantum! Thank you.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on September 05, 2019, 01:28:31 PM
(https://musculardystrophynews.com/wp-content/uploads/2018/09/grants-1200x480@2x.jpg)
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on September 05, 2019, 06:49:40 PM
(https://i.ytimg.com/vi/pyWuuHGZKaA/maxresdefault.jpg)


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

Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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/
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on October 17, 2019, 03:39:12 PM
 
Keynote with Alex Azar, Secretary of Health and Human Services,


(https://i2.createsend1.com/ei/j/FB/98F/1D7/040607/csfinal/Azarportrait-9901450000028a3c.jpeg)

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
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: 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?
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Quantum on October 23, 2019, 09:58:27 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 
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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.

Title: Re: NORD (National Organization for Rare Disorders) News
Post by: drop247 on October 28, 2019, 01:06:12 PM
Wonderful.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on October 28, 2019, 01:39:31 PM
drop247, thank you!
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on November 01, 2019, 02:05:11 PM


Here is the November NORD News:


Complete November News:
https://nationalorganizationforraredisorders.createsend1.com/t/ViewEmail/j/C7693E85760008502540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8




Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on November 12, 2019, 04:59:37 PM
NORD Rare Action Network Monthly Update

http://t.congressweb.com/w/?EFOXFDAATN
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on December 02, 2019, 03:17:52 PM

Here is the December NORD News:


Complete December News:
https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/6F14DE97A1E8E5212540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on December 03, 2019, 02:59:32 PM
TODAY: HAPPY GIVING TUESDAY
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/58532AD247F861942540EF23F30FEDED/FFA142944D02FA97A29558A201773426
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Spartak on December 15, 2019, 12:44:58 AM
Wonderful.
agree
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on December 17, 2019, 01:10:25 PM
From NORD today:


“Because of you [contributors], our Rare Disease Research Grants program celebrated its 30th anniversary and has awarded over $8 million in research grant funding since 1989, leading to two FDA-approved therapies. “
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on December 26, 2019, 09:21:18 AM
From NORD today:

“There are over 7,000 rare diseases currently identified by the National Institutes of Health. Fewer than 10% of them have an FDA-approved treatment. Over the past 30 years, NORD has awarded more than 150 grants across 13 countries and 28 states, with over $8 million in approved funding since the program’s launch in 1989. These grants have led to the development of two FDA-approved treatments.”

Everyone: if we’re lucky, our NORD Grant will eventually lead to POIS having the 3rd FDA-approved treatment. Hopefully, sooner than later!
Demo
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on December 26, 2019, 02:03:11 PM
(https://www.congressplus.com/userfiles/2097/NRD-2000%202019%20Holiday%20Card_EmailHeader_v5a.jpg)





http://t.congressweb.com/w/?VQNPWGKWWL
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on December 30, 2019, 01:13:53 PM
NORD writes:
“There is still time to make a tax-deductible donation in 2019 [NOT FOR POIS - - WE FORUM MEMBERS ALREADY DONATED THE MAXIMUM POSSIBLE TO NORD FOR POIS RESEARCH] - -  THIS IS FOR *OTHER* RARE DISORDERS - Demo] so that NORD can help more individuals like little Eddie (click link)  by funding life-changing research for rare diseases.”
https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/397A8952ED8625F62540EF23F30FEDED/0FFCC37254CD13884415EB25BE999822
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on January 03, 2020, 11:08:46 PM


Here is the January NORD News:


Complete January News:

https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/295B14247EB0EDC02540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on January 22, 2020, 03:55:50 PM
 
The Food and Drug Administration (FDA) understands that patients and their caregivers are the experts on what it is like to live with their [rare] condition. This is why the FDA wants to hear from you.

Free Webinar tomorrow - register here:
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/73025F78214175172540EF23F30FEDED/FFA142944D02FA97A29558A201773426
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on January 29, 2020, 09:58:05 AM
February 29, 2020
RARE DISEASE DAY!
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/22A26B1C60EE94052540EF23F30FEDED/FFA142944D02FA97A29558A201773426
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on February 03, 2020, 11:03:30 AM
February NORD news:

https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/FB52F0F5F35487812540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8

(https://i5.createsend1.com/ei/j/51/85E/088/040159/csfinal/NRD-1184SYS_Header_960x355_FNL_blue-2d0881cbfa25e014.jpg)
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on February 03, 2020, 09:52:39 PM
(https://www.teenplaybook.org/wp-content/uploads/2018/11/share-your-story-graphic-01-1024x538.jpg)



Share Your POIS Story?
https://rarediseases.org/shareyourstory/
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on February 12, 2020, 12:24:31 PM
(https://img3.rarediseaseday.org/2020/rdd2020-poster-800x1200.jpg)

https://www.rarediseaseday.org/
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on February 28, 2020, 03:33:48 PM
NORD (National Organization for Rare Disorders) Launches
Natural History Study for Undiagnosed Rare Diseases
https://tinyurl.com/qtpuarr

Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 02, 2020, 12:38:10 PM


Here is the March NORD News:

https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/B976FA928761B8DE2540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 04, 2020, 11:06:04 AM

Working Rare: Employment Considerations for
People Living with Rare Disorders


Free Webinar - - enroll now
Wed, Mar 25, 2020 2:00 PM EDT (11:00 AM PDT)

https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/B7ACB1810E57084F2540EF23F30FEDED/FFA142944D02FA97A29558A201773426
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Limejuice on March 14, 2020, 05:15:52 PM
This might be interesting...

Unhappy as a software engineer I left the industry to start a business that met my unique health issues, and life has greatly improved since! This webinar might give tips for starting a business or finding a job that allows the flexibility we need as sufferers.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 14, 2020, 05:41:03 PM
Thanks, Limejuice! I’m glad that some of these NORD announcements ring a bell...at least for some POISers! :)
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 14, 2020, 05:49:13 PM
(https://i.pinimg.com/originals/f7/f9/de/f7f9de9e8391fd17e53e97fd1dc9ee3d.jpg)
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Limejuice on March 14, 2020, 08:16:37 PM
Haha!
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 14, 2020, 10:42:29 PM
Limejuice, it’s been great to have you here as a forum star all these years!
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Limejuice on March 15, 2020, 11:03:22 PM

Limejuice, it’s been great to have you here as a forum star all these years!


It’s been a pleasure to serve our community in my limited capacity. Thank you for your leadership and vision to help drive us towards a cure!


Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 19, 2020, 05:54:59 PM

 
COVID-19 Resources for the Rare Community
https://nationalorganizationforraredisorders.createsend1.com/t/ViewEmail/j/F62D1DE52582C61A2540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 31, 2020, 01:09:02 PM

(https://rarediseases.org/wp-content/uploads/2014/11/webinar.image_-e1434556991536.png)

Free Webinar R I G H T   N O W
A Rare Response: Addressing the COVID-19 Pandemic



Register for the FREE Webinar
TODAY, March 31
2:00pm - 3:00pm EDT

https://tinyurl.com/wtaln56
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on April 01, 2020, 10:39:37 AM
April NORD News:

https://tinyurl.com/vmwx3dp
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on April 21, 2020, 03:29:27 PM
COVID-19: Current Status of Testing, Treatments and Vaccines

Register for the FREE NORD Webinar
Tuesday, May 5
2:00pm - 2:30pm EDT

https://tinyurl.com/yajbh9z9
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on April 30, 2020, 09:43:37 AM
NORD’s COVID-19 Emergency Programs
https://rarediseases.org/covid-19-emergency-programs/
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on May 01, 2020, 03:46:50 PM
NORD May News
https://tinyurl.com/yb2jgfgh
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on May 04, 2020, 09:25:39 AM
Free Webinar Tomorrow

COVID-19: Current Status of Testing, Treatments and Vaccines
https://tinyurl.com/ycgpblml

Register for the FREE Webinar
Tomorrow, May 5
2:00pm - 2:30pm EDT
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on May 05, 2020, 02:58:52 PM
Report from NORD Reveals Significant Impact
of COVID-19 on Rare Disease Community

https://tinyurl.com/y74c28r4
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on May 06, 2020, 11:22:15 AM
Registration for the NORD Living Rare, Living Stronger
Virtual Forum is Now Open!

Register By
July 19, 2020  4:30 PM
https://tinyurl.com/yauc4ptz
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on May 08, 2020, 04:10:49 PM

***NORD (National Organization for Rare Disorders) is the organization that manages our current (2019-2020) POIS Research - - via a Scientific Grant totally funded by us here at POISCenter.com***
https://rarediseases.org/



*** More about our current POIS Research: ***
https://tinyurl.com/ybph4fh7
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on June 01, 2020, 03:20:56 PM
June 2020 NORD News
https://tinyurl.com/y9dv4z9c
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on July 01, 2020, 12:16:46 PM
July 2020 NORD News:
https://tinyurl.com/y9qcunvt
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on July 02, 2020, 07:39:24 PM
The 2020 Living Rare Forum
Is Only Two Weeks Away


Check out the Agenda for the 2020
Living Rare Virtual Forum!

https://tinyurl.com/yczfunl9



(https://rarediseases.org/wp-content/uploads/2020/05/NRD-2003-LRLS20_WebHDR_960x355_VirtualEvent-2.jpg)
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on July 07, 2020, 01:52:48 PM
Upcoming webinar:
From Data to Rare Disease Cures: Speeding the Process
https://tinyurl.com/y8ldwb29
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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)
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on August 29, 2020, 07:19:37 AM
(http://i1.cmail19.com/ei/j/EC/E26/1A7/001128/csfinal/NRD-2018Summit_EmailHeader_1440x556_v1-9900000000079e3c.jpg)

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




(NORD is the supervising organization for
our 2020-2021 POIS Research Team)
https://tinyurl.com/yxt2shaq
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on October 01, 2020, 02:19:45 PM
(http://i1.cmail19.com/ei/j/EC/E26/1A7/001128/csfinal/NRD-2018Summit_EmailHeader_1440x556_v1-9900000000079e3c.jpg)
(https://rarediseases.org/wp-content/uploads/2019/07/nord-summit-sticky-2019-1.jpg)

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 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on October 06, 2020, 05:26:11 PM
“Last Chance to Register for the 2020 NORD Summit”
https://tinyurl.com/y3ol3xe7


(https://em.realtime.email/service/rte?kind=countdown&id=1640056701&ts=1602010036)
     Days          Hours       Minutes     Seconds






(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Spartak on November 04, 2020, 06:21:55 PM
Sorry Demo, English is not my native tongue, are news good or bad?
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on November 04, 2020, 08:32:28 PM
Spartak, not bad/not good, only about NORD programs & services.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on December 02, 2020, 03:34:36 PM
(http://i1.cmail19.com/ei/j/D7/635/96E/065810/csfinal/ResponsibleEvenFrillneckedlizard-small-9903cf06db028a3c.gif)
from NORD to everyone who generously donated to the POIS Research Study 2020-2021!
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on December 11, 2020, 12:49:17 AM
(https://mma.prnewswire.com/media/74637/NORD_Logo.jpg?p=publish)
(https://rarediseases.org/wp-content/uploads/2014/11/webinar-icon.png)   (https://rarediseases.org/wp-content/uploads/2014/11/webinar.image_-e1434556991536.png)


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
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: Aladin on December 11, 2020, 12:18:23 PM
so, did they reach a sufficient number of candidates to conduct the study?
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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.
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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 )

Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on January 05, 2021, 07:08:52 AM
(https://rarediseases.org/wp-content/uploads/2020/12/NRD-2113-LRLS21_WebHDR_960x355_GEN_v1-1.jpg)

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 )

Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on January 05, 2021, 01:31:07 PM
(https://rarediseases.org/wp-content/uploads/2020/12/event-banner.jpg)


 
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 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx 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 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on February 27, 2021, 05:36:36 PM


(https://httpacdassociation.files.wordpress.com/2020/10/rare-disease-day-slider-2021-1715-x-910.jpg?w=1715&h=910&crop=1)
Getting Involved With Rare Disease Day
February 28  Is Easy

https://tinyurl.com/y3ctvpu2


     Days              Hours              Minutes      Seconds
(https://em.realtime.email/service/rte?kind=countdown&id=1972850300&ts=1609797499)



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

Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 01, 2021, 04:34:01 PM


March 2021 NORD news:

https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/603D60E0ED1CA5992540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8



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

Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 04, 2021, 04:40:31 PM
Report Finds Treatments for Rare Diseases Account for Only 11% of US Drug Spending
https://tinyurl.com/4hn6wt9e
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on March 18, 2021, 03:59:38 PM
(https://rarediseases.org/wp-content/uploads/2021/02/NRD-2113-LRLS21_wRIA_WebHDR_960x355_GEN_v2.jpg)

https://tinyurl.com/3bnfm4fe


(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on April 09, 2021, 06:02:01 PM


April 2021 NORD news:

https://tinyurl.com/5f3ysvfe

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on May 03, 2021, 04:14:32 PM


May 2021 NORD news:

https://tinyurl.com/4puxz4cm

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on May 25, 2021, 10:47:44 AM
Oral Health and Rare Disorders - Webinar
Date:
May 26, 2021
Time:
2:00 - 3:00pm ET


https://tinyurl.com/vzj2ev95

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on June 01, 2021, 10:16:21 AM
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)




FDA and CDC Leaders Discuss:
COVID-19 Pandemic, Vaccines, and Special Considerations for the
Rare Disease Community

Date: June 16, 2021
Time: 2:00 - 3:00pm ET
https://tinyurl.com/4kcvk8y4

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us here at POISCenter:
https://tinyurl.com/ybph4fh7 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on June 01, 2021, 02:10:30 PM


June 2021 NORD news:

https://tinyurl.com/2wb6wxne

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/ybph4fh7 )


Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on July 01, 2021, 02:30:04 PM



May 2021 NORD news:

https://tinyurl.com/4puxz4cm

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://tinyurl.com/y98c2tja
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on July 01, 2021, 02:40:36 PM


July 2021 NORD news:

https://tinyurl.com/y98c2tja

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on July 27, 2021, 09:44:13 AM
NORD
RARECARE
QUARTERLY




https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/40F95F2D86F2DF882540EF23F30FEDED/0FFCC37254CD13884415EB25BE999822


(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on August 02, 2021, 04:34:36 PM


August 2021 NORD News:

https://tinyurl.com/y97h9szw

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on August 19, 2021, 12:15:35 PM

(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)

Breakthrough Summit 2021: The Most Important Rare Disease Conference of the Year

https://tinyurl.com/7f95wu8v













(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us here at POISCenter:
https://tinyurl.com/ybph4fh7 )
Title: Re: NORD (National Organization for Rare Disorders) News
Post by: demografx on September 01, 2021, 06:29:11 PM



September 2021 NORD News:

https://tinyurl.com/46fnf9c5

(NORD - National Organization for Rare Disorders) is the supervising organization for our 2021-2022 POIS Research Study, funded by us at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0