Author Topic: NORD (National Organization for Rare Disorders) News (Read 36854 times)

demografx · « **Reply #100 on:** February 28, 2022, 01:20:51 PM »

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

demografx · « **Reply #101 on:** March 01, 2022, 05:48:17 PM »

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

demografx · « **Reply #102 on:** March 04, 2022, 03:36:08 PM »

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.

From:

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

demografx · « **Reply #103 on:** April 27, 2022, 11:08:06 AM »

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 )

demografx · « **Reply #104 on:** June 01, 2022, 06:27:29 PM »

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

demografx · « **Reply #105 on:** June 09, 2022, 05:44:41 PM »

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

demografx · « **Reply #106 on:** July 03, 2022, 10:06:42 PM »

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

demografx · « **Reply #107 on:** August 02, 2022, 04:50:22 PM »

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

demografx · « **Reply #108 on:** September 02, 2022, 04:00:00 PM »

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

demografx · « **Reply #109 on:** October 01, 2022, 01:13:54 PM »

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

Limejuice · « **Reply #110 on:** October 01, 2022, 04:34:00 PM »

Looking forward to the next time we make front page!

demografx · « **Reply #111 on:** October 01, 2022, 04:51:29 PM »

Quote from: Limejuice on October 01, 2022, 04:34:00 PM

Looking forward to the next time
we make [NORD] front page!

demografx · « **Reply #112 on:** November 01, 2022, 12:20:08 PM »

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

demografx · « **Reply #113 on:** November 28, 2022, 11:01:07 AM »

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

Aladin · « **Reply #114 on:** December 09, 2022, 03:26:29 PM »

Does anybody have any significant news from these guys?

demografx · « **Reply #115 on:** January 04, 2023, 02:57:11 PM »

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

Journey · « **Reply #116 on:** January 11, 2023, 09:27:06 PM »

Anything on the study?

demografx · « **Reply #117 on:** January 14, 2023, 01:47:40 AM »

Edited for POIS Researchers’ quotes

Quote from: Journey on January 11, 2023, 09:27:06 PM

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.”

demografx · « **Reply #118 on:** January 17, 2023, 12:27:59 PM »

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

demografx · « **Reply #119 on:** February 07, 2023, 04:27:38 PM »

February, 2023
NORD eNews:
https://tinyurl.com/yc43wpc2

In February NORD News:

(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