Author Topic: NORD (National Organization for Rare Disorders) News (Read 36788 times)

drop247 · « **Reply #20 on:** October 28, 2019, 01:06:12 PM »

Wonderful.

demografx · « **Reply #21 on:** October 28, 2019, 01:39:31 PM »

drop247, thank you!

demografx · « **Reply #22 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

demografx · « **Reply #23 on:** November 12, 2019, 04:59:37 PM »

NORD Rare Action Network Monthly Update

http://t.congressweb.com/w/?EFOXFDAATN

demografx · « **Reply #24 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

demografx · « **Reply #25 on:** December 03, 2019, 02:59:32 PM »

TODAY: HAPPY GIVING TUESDAY
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/58532AD247F861942540EF23F30FEDED/FFA142944D02FA97A29558A201773426

Spartak · « **Reply #26 on:** December 15, 2019, 12:44:58 AM »

Quote from: drop247 on October 28, 2019, 01:06:12 PM

Wonderful.

agree

demografx · « **Reply #27 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. “

demografx · « **Reply #28 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

demografx · « **Reply #29 on:** December 26, 2019, 02:03:11 PM »

http://t.congressweb.com/w/?VQNPWGKWWL

demografx · « **Reply #30 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

demografx · « **Reply #31 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

demografx · « **Reply #32 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

demografx · « **Reply #33 on:** January 29, 2020, 09:58:05 AM »

February 29, 2020
RARE DISEASE DAY!
https://nationalorganizationforraredisorders.cmail19.com/t/ViewEmail/j/22A26B1C60EE94052540EF23F30FEDED/FFA142944D02FA97A29558A201773426

demografx · « **Reply #34 on:** February 03, 2020, 11:03:30 AM »

February NORD news:

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

demografx · « **Reply #35 on:** February 03, 2020, 09:52:39 PM »

Share Your POIS Story?
https://rarediseases.org/shareyourstory/

demografx · « **Reply #36 on:** February 12, 2020, 12:24:31 PM »

https://www.rarediseaseday.org/

demografx · « **Reply #37 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

demografx · « **Reply #38 on:** March 02, 2020, 12:38:10 PM »

Here is the March NORD News:

https://nationalorganizationforraredisorders.cmail20.com/t/ViewEmail/j/B976FA928761B8DE2540EF23F30FEDED/1A0C0FBB09C36DC0405DC10595964AA8

demografx · « **Reply #39 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