POISCENTER
General Category => POIS Research => Topic started by: demografx on July 01, 2019, 04:19:15 PM
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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
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(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
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Here is the August NORD News:
Complete August News:
https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/EF9A7E6F9BD6995E2540EF23F30FEDED
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Let's make sure we recruit as many as possible, making this the most relevant research on POIS to date.
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Nas, thanks for your enthusiasm for the upcoming POIS Research.
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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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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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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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Well said, Quantum! Thank you.
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(https://musculardystrophynews.com/wp-content/uploads/2018/09/grants-1200x480@2x.jpg)
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(https://i.ytimg.com/vi/pyWuuHGZKaA/maxresdefault.jpg)
Includes interactive discussions- -
https://tinyurl.com/y3rh38sf
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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.
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“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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***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
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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
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“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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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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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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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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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.
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Wonderful.
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drop247, thank you!
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Here is the November NORD News:
Complete November News:
https://nationalorganizationforraredisorders.createsend1.com/t/ViewEmail/j/C7693E85760008502540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
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NORD Rare Action Network Monthly Update
http://t.congressweb.com/w/?EFOXFDAATN
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Here is the December NORD News:
Complete December News:
https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/6F14DE97A1E8E5212540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
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TODAY: HAPPY GIVING TUESDAY
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/58532AD247F861942540EF23F30FEDED/FFA142944D02FA97A29558A201773426
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Wonderful.
agree
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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. “
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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
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(https://www.congressplus.com/userfiles/2097/NRD-2000%202019%20Holiday%20Card_EmailHeader_v5a.jpg)
http://t.congressweb.com/w/?VQNPWGKWWL
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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
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Here is the January NORD News:
Complete January News:
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/295B14247EB0EDC02540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
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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
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February 29, 2020
RARE DISEASE DAY!
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/22A26B1C60EE94052540EF23F30FEDED/FFA142944D02FA97A29558A201773426
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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)
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(https://www.teenplaybook.org/wp-content/uploads/2018/11/share-your-story-graphic-01-1024x538.jpg)
Share Your POIS Story?
https://rarediseases.org/shareyourstory/
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(https://img3.rarediseaseday.org/2020/rdd2020-poster-800x1200.jpg)
https://www.rarediseaseday.org/
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NORD (National Organization for Rare Disorders) Launches
Natural History Study for Undiagnosed Rare Diseases
https://tinyurl.com/qtpuarr
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Here is the March NORD News:
https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/B976FA928761B8DE2540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
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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
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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.
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Thanks, Limejuice! I’m glad that some of these NORD announcements ring a bell...at least for some POISers! :)
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(https://i.pinimg.com/originals/f7/f9/de/f7f9de9e8391fd17e53e97fd1dc9ee3d.jpg)
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Haha!
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Limejuice, it’s been great to have you here as a forum star all these years!
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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!
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COVID-19 Resources for the Rare Community
https://nationalorganizationforraredisorders.createsend1.com/t/ViewEmail/j/F62D1DE52582C61A2540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8
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(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
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April NORD News:
https://tinyurl.com/vmwx3dp
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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
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NORD’s COVID-19 Emergency Programs
https://rarediseases.org/covid-19-emergency-programs/
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NORD May News
https://tinyurl.com/yb2jgfgh
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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
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Report from NORD Reveals Significant Impact
of COVID-19 on Rare Disease Community
https://tinyurl.com/y74c28r4
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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
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***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
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June 2020 NORD News
https://tinyurl.com/y9dv4z9c
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July 2020 NORD News:
https://tinyurl.com/y9qcunvt
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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)
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Upcoming webinar:
From Data to Rare Disease Cures: Speeding the Process
https://tinyurl.com/y8ldwb29
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August 2020 NORD News
https://tinyurl.com/y5vxz7c7
(NORD is the supervising organization for the POIS Research Team)
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(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
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September 2020 NORD News
https://tinyurl.com/yyd5ongu
(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
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October 2020 NORD News
https://tinyurl.com/y26qpt5b
(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
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(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 )
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“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 )
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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
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November 2020 NORD news
https://tinyurl.com/y6rbpsat
(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
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Sorry Demo, English is not my native tongue, are news good or bad?
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Spartak, not bad/not good, only about NORD programs & services.
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(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!
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December 2020 NORD news
https://tinyurl.com/yxcujcb4
(NORD is the supervising organization for our 2020-2021 POIS Research Study
https://tinyurl.com/ybph4fh7 )
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(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
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so, did they reach a sufficient number of candidates to conduct the study?
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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.
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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 )
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(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 )
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(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 )
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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 )
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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 )
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(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 )
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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 )
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Report Finds Treatments for Rare Diseases Account for Only 11% of US Drug Spending
https://tinyurl.com/4hn6wt9e
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(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 )
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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 )
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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 )
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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 )
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(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 )
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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 )
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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
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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
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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
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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
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(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 )
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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
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(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
(https://www.m4rd.org/wp-content/uploads/2021/09/Screenshot-2021-09-07-at-13.16.58.png)
https://tinyurl.com/rm6e5uyn
(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
-
October 2021 NORD News:
https://tinyurl.com/4thnfswp
(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
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
(http://i1.cmail20.com/ei/j/2C/022/0A1/035932/csfinal/rarecare-quarterly-hero-6b480cbb140f2111.png)
https://tinyurl.com/rxkau5xc
(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
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
December 2021 NORD eNews:
https://tinyurl.com/2p85fpp6
(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
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
January 2022
NORD eNews:
https://tinyurl.com/mtdhtzxx
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2022 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
(https://www.newberryobserver.com/wp-content/uploads/2021/02/126480465_web1_RDD-date-400.jpg)
https://tinyurl.com/39ajwu9u
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2022 POIS Research Study, funded by us at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
March 2022
NORD eNews:
https://tinyurl.com/mr3mcs99
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2022 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
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Light Up For Rare Disorders Like POIS
Advocates from across the country pledged and successfully illuminated landmarks and buildings in Rare Disease Day colors as part of NORD's #LightUpforRare initiative.
(https://content.app-us1.com/qLQeV/2022/03/04/677e4d66-6eed-4f71-8483-20b4a04c56f2.jpeg?r=420331029)
From: (https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
Thank You For Making Rare Disease Day 2022 A Success!
https://tinyurl.com/37d8x7er
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2022 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
Walk in Our Shoes: The Experience of Rare Disease Patients
Date: Tomorrow,
April 28, 2022
Time: 2:00-3:00pm ET
https://tinyurl.com/a3ak9js8
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2022 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0 )
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(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
June 2022
NORD eNews:
https://tinyurl.com/2d5657w4
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2022 POIS Research Study!
======================================================
funded by all of us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
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NORD Celebrates Two Wins for Rare Disease Advocacy
https://tinyurl.com/npfxvacm
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2022 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
July 2022
NORD eNews:
http://tinyurl.com/4ru9zmsv
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2022 POIS Research Study!
======================================================
funded by all of us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
August 2022
NORD eNews:
https://tinyurl.com/2u6pevum
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2022 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
September 2022
NORD eNews:
https://tinyurl.com/2p9hddy3
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2022 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
October 2022
NORD eNews:
https://tinyurl.com/2p9hddy3
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2022 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
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Looking forward to the next time we make front page!
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Looking forward to the next time
we make [NORD] front page!
(https://media.tenor.com/aY4Z1Si1VeIAAAAM/laugh-slam.gif)
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(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
November 2022
NORD eNews:
https://tinyurl.com/bdhabru6
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2022-3 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
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(https://www.congressplus.com/userfiles/2097/RDD%20Logo%20Header.jpg)
Please Join Us
Rare Disease Day 2023
Informational Kickoff Webinar
Wednesday, November 30, 2022
1:00 p.m. - 2:00 p.m. EST
https://tinyurl.com/4prje9kv
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2022-3 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
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Does anybody have any significant news from these guys?
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(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
January, 2023
SPECIAL EDITION NORD eNews:
https://tinyurl.com/mvfd445v
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2023 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
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Anything on the study?
-
Edited for POIS Researchers’ quotes
Anything on the [2023 POIS Research] study?
Thank you, Journey.
From the 2023 POIS Study Research Team:
“We are working with Dr. Prause and UCLA (University of California, Los Angeles) to determine how to move the study to UCLA.
Currently, we met with and are working with the UCLA institutional review board (IRB) to figure out how to best approach human subject protections, particularly given we are collaborating across multiple institutions (UCLA and University of Nebraska - Lincoln [UN-L] ).
We are hopeful that moving the study to UCLA will make it more accessible to POIS Research Study participants and will provide additional support moving forward.”
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(https://pbs.twimg.com/media/Fkm2kHbXEAIt1Al.jpg:large)
LIVING RARE
LIVING STRONGER
MAY 6, 2023 | WASHINGTON, DC
https://tinyurl.com/ysc2ku5b
• Attend In-Person
• Attend Virtually
https://tinyurl.com/49waap4j
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2023 POIS Research Study, funded by us here at POISCenter:
https://tinyurl.com/33az7ard
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
February, 2023
NORD eNews:
https://tinyurl.com/yc43wpc2
In February NORD News:
(https://localist-images.azureedge.net/photos/39190780661517/card/40a9362c8e55f2d1587cf3eadc628e4b29efedd4.jpg)
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2023 POIS Research Study
======================================================
funded by us here at POISCenter:
https://tinyurl.com/mwhy42n4
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(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
Attend a Rare Disease Day Event Near You
https://tinyurl.com/mr3t5e24
(NORD - National Organization for Rare Disorders) is the supervising organization for our
========================
2023 POIS Research Study
========================
funded by us here at POISCenter:
https://tinyurl.com/mwhy42n4
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
April 2023
NORD eNews:
https://tinyurl.com/yzy95an5
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2023 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
April 2023
NORD eNews:
https://tinyurl.com/4529xn4y
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2023 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
Looking Forward to the 2023 NORD Summit? Take a Look Back at Last Year...
http://tinyurl.com/27ny82hh
(NORD - National Organization for Rare Disorders) is the supervising organization for our
======================================================
2023 POIS Research Study
======================================================
funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
June 2023
NORD eNews:
https://tinyurl.com/43uwef73
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2023 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
FROM:
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
“Congratulations - Together, we protected Medicaid coverage for the rare disease community!”
https://tinyurl.com/mry7ww3w
(NORD - National Organization for Rare Disorders) is the supervising organization for our 2023 POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
July 2023
NORD eNews:
https://tinyurl.com/2x2tmxty
(NORD - National Organization for Rare Disorders) is the supervising organization for our NORD/POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
August 2023
NORD eNews:
https://tinyurl.com/323r7tmp
(NORD - National Organization for Rare Disorders) is the supervising organization for our NORD/POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
September 2023
NORD eNews:
https://tinyurl.com/2p7zz8mr
(NORD - National Organization for Rare Disorders) is the supervising organization for our NORD/POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
September 2023
NORD eNews:
https://tinyurl.com/2p7zz8mr
(NORD - National Organization for Rare Disorders) is the supervising organization for our NORD/POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0
-
I haven't been on the POIS centre for a long time. Can somebody give an update about the NORD research? Last time i visited the site here, they were recruiting patients for testing. Have there been evolutions ever since?
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I haven't been on the POIS centre for a long time. Can somebody give an update about the NORD research? Last time i visited the site here, they were recruiting patients for testing. Have there been evolutions ever since?
No
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I haven't been on the POIS centre for a long time. Can somebody give an update about the NORD research? Last time i visited the site here, they were recruiting patients for testing. Have there been evolutions ever since?
Testing will be underway soon.
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(https://media4.giphy.com/media/2MhIzztIOCLs7Uaveb/200.gif)
March 2024
NORD eNews:
https://tinyurl.com/3truka7t
(NORD - National Organization for Rare Disorders) is the supervising organization for our NORD/POIS Research Study, funded by us here at POISCenter:
https://poiscenter.com/forums/index.php?topic=3006.0