Author Topic: NORD (National Organization for Rare Disorders) News  (Read 8305 times)

demografx

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Re: NORD (National Organization for Rare Disorders) News
« Reply #75 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 )

« Last Edit: January 04, 2021, 09:47:14 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 #76 on: January 05, 2021, 07:08:52 AM »


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 )

« Last Edit: January 05, 2021, 07:12:56 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 #77 on: January 05, 2021, 01:31:07 PM »



 
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 )
« Last Edit: January 06, 2021, 11:23:15 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 #78 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 )
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 #79 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 )
« Last Edit: February 01, 2021, 07:03:59 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 #80 on: February 27, 2021, 05:36:36 PM »



Getting Involved With Rare Disease Day
February 28  Is Easy

https://tinyurl.com/y3ctvpu2


     Days              Hours              Minutes      Seconds




(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 )

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 #81 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 )

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 #82 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
« Last Edit: March 05, 2021, 12:18:41 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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  • Posts: 5427
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #83 on: March 18, 2021, 03:59:38 PM »


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 )
« Last Edit: March 18, 2021, 06:37:34 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

  • Administrator
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  • Posts: 5427
  • All of us working together to defeat POIS!
Re: NORD (National Organization for Rare Disorders) News
« Reply #84 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 )
« Last Edit: April 10, 2021, 01:39:39 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