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Daily Archives: September 5, 2016

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Baby Boomers With Hemophilia Did Their Own Thing, Man
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Baby Boomers With Hemophilia Did Their Own Thing, Man

  • Post author:Ronald Ledsen
  • Post published:September 5, 2016
  • Post category:Hemophilia A/Hemophilia B/Rare Disease

“Only the good die young.” “Live fast, die young, leave a good looking corpse.” “The idea is to die young as late as possible.” What do these three quotes have…

Continue Reading Baby Boomers With Hemophilia Did Their Own Thing, Man
Kicking It On Labor Day

Kicking It On Labor Day

  • Post author:Kristen Lord
  • Post published:September 5, 2016
  • Post category:Rare Disease

Happy Labor Day! I hope this Labor Day finds you well! Kick back, relax, and enjoy the fruits of your labor! While you do that be sure to send good…

Continue Reading Kicking It On Labor Day
Fabry Disease is in the Spotlight at this Amazing Pharma Company
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Fabry Disease is in the Spotlight at this Amazing Pharma Company

  • Post author:Erica Zahn
  • Post published:September 5, 2016
  • Post category:Fabry Disease/Rare Disease

Fabry disease results from deficient activity of alpha-galactosidase A (a-GAL A). Bless you. What? That's an enzyme which breaks down complex sugar-lipid molecules called glycolipids. When the body can't break…

Continue Reading Fabry Disease is in the Spotlight at this Amazing Pharma Company
Labor Day: For Any And Everyone

Labor Day: For Any And Everyone

  • Post author:Kristen Lord
  • Post published:September 5, 2016
  • Post category:Rare Disease

Labor Day, devoted to no man or woman, celebrates all of us and our pursuit of happiness and the American Dream. There are some out there who suffer illnesses, whether…

Continue Reading Labor Day: For Any And Everyone
Here’s Why You Need to Help Mitch McKee Fight Amyloidosis
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Here’s Why You Need to Help Mitch McKee Fight Amyloidosis

  • Post author:James Ernest Cassady
  • Post published:September 5, 2016
  • Post category:Amyloidosis/Rare Disease/Timely

On November 12, 2016, Present Troubles Racing will host their Hills and Hollers Half Marathon & 5K, which is intended to raise awareness about amyloidosis and funds to help support those affected…

Continue Reading Here’s Why You Need to Help Mitch McKee Fight Amyloidosis
How to Go to College With Hemophilia
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How to Go to College With Hemophilia

  • Post author:EmpatheticBadass
  • Post published:September 5, 2016
  • Post category:Hemophilia A/Hemophilia B/Rare Disease/Timely

Wanna know one GOOD thing about having a chronic illness like hemophilia? It can help you get a scholarship that might just change your life! When you have a chronic…

Continue Reading How to Go to College With Hemophilia
El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV

El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV

  • Post author:Patient Worthy Contributor
  • Post published:September 5, 2016
  • Post category:CVID/Primary Immunodeficiencies

Kathy Antilla recuerda el momento en que escuchó a su hijo, Isaac, decir esas palabras que ella pensó que nunca oiría: "¡Mamá! ¡Mírame! Soy como un niño normal ahora." En…

Continue Reading El miedo, la frustración, la esperanza, aceptación: 4 luchas de un diagnóstico de ICV

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