Author Topic: NORD (National Organization for Rare Disorders) News  (Read 12691 times)

drop247

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Re: NORD (National Organization for Rare Disorders) News
« Reply #20 on: October 28, 2019, 01:06:12 PM »
Wonderful.

demografx

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Re: NORD (National Organization for Rare Disorders) News
« Reply #21 on: October 28, 2019, 01:39:31 PM »
drop247, thank you!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD (National Organization for Rare Disorders) News
« Reply #23 on: November 12, 2019, 04:59:37 PM »
NORD Rare Action Network Monthly Update

http://t.congressweb.com/w/?EFOXFDAATN
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

Spartak

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no sugar diet helps me a tiny bit, also makes my mind much calmer in general. Sugar is definitely something my body does not handle well. Also I noticed that other inflammations like a hangover are better since I quit sugar. I avoid sweet fruits as well.

demografx

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Re: NORD (National Organization for Rare Disorders) News
« 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. “
« Last Edit: December 17, 2019, 04:01:36 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD (National Organization for Rare Disorders) News
« 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
« Last Edit: December 26, 2019, 09:25:42 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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« Last Edit: December 26, 2019, 07:09:55 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD (National Organization for Rare Disorders) News
« 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
« Last Edit: December 30, 2019, 03:53:10 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD (National Organization for Rare Disorders) News
« 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
« Last Edit: January 22, 2020, 04:40:10 PM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • All of us working together to defeat POIS!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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« Last Edit: February 03, 2020, 11:08:10 AM by demografx »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD (National Organization for Rare Disorders) News
« Reply #35 on: February 03, 2020, 09:52:39 PM »
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

  • Administrator
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  • Posts: 5631
  • All of us working together to defeat POIS!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD (National Organization for Rare Disorders) News
« 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

10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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  • Posts: 5631
  • All of us working together to defeat POIS!
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business

demografx

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Re: NORD (National Organization for Rare Disorders) News
« 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
10 years of significant POIS-reduction, treatment consisting of daily (365 days/year) testosterone patches.

TRT must be checked out carefully with your doctor due to fertility, cardiac and other risks.

40+ years of severe 4-days-POIS, married, raised a family, started/ran a business