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Daily Archives: March 28, 2016

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This 50-Year-Old is Doing WHAT For Narcolepsy Awareness?!

This 50-Year-Old is Doing WHAT For Narcolepsy Awareness?!

  • Post author:James Ernest Cassady
  • Post published:March 28, 2016
  • Post category:Narcolepsy/Rare Disease/Timely

Wake up, Narcolepsy! When runners leave the starting line in Hopkinton, MA, for this year's Boston Marathon, the pack will contain some extra motivated individuals. TeamWUN will once again sponsor "wunners"…

Continue Reading This 50-Year-Old is Doing WHAT For Narcolepsy Awareness?!
Consejos: Lee esto si no hablas otro idioma mas que el español

Consejos: Lee esto si no hablas otro idioma mas que el español

  • Post author:Patient Worthy Contributor
  • Post published:March 28, 2016
  • Post category:Rare Disease

Yo soy hispanohablante de nacimiento pero me he convertido en una persona plurilingüe. Hablo Inglés, español y portugués y estoy aprendiendo a hablar francés ahora. La importancia de saber hablar más de un…

Continue Reading Consejos: Lee esto si no hablas otro idioma mas que el español
Aplastic Anemia? What To Do If You Are Rejected for Life-Saving Clinical Trial
Source: pixabay.com

Aplastic Anemia? What To Do If You Are Rejected for Life-Saving Clinical Trial

  • Post author:Alisha Stone
  • Post published:March 28, 2016
  • Post category:Aplastic anemia/Rare Disease

Recently I read an interesting article about a new med that’s been shown to speed the production of blood platelets by as much as 40% which could potentially improve the…

Continue Reading Aplastic Anemia? What To Do If You Are Rejected for Life-Saving Clinical Trial
Falling Asleep on the Job and How to Get Back Up with Narcolepsy

Falling Asleep on the Job and How to Get Back Up with Narcolepsy

  • Post author:Erica Zahn
  • Post published:March 28, 2016
  • Post category:Narcolepsy/Rare Disease

Thanks to narcolepsy, Brianne had an unusual childhood. She began having the symptoms of narcolepsy around the age of seven. As a young girl, Brianne would sleepwalk into the kitchen…

Continue Reading Falling Asleep on the Job and How to Get Back Up with Narcolepsy
What Price was This Woman with Myasthenia Gravis Forced to Pay?

What Price was This Woman with Myasthenia Gravis Forced to Pay?

  • Post author:Kiki Jones
  • Post published:March 28, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Wheelchair pillow: $300 Monthly prescription costs: $400 The cost of having multiple autoimmune disorders? Exorbitant (and growing). On websites like PatientWorthy, we talk a lot about the physical tolls rare…

Continue Reading What Price was This Woman with Myasthenia Gravis Forced to Pay?
Young Daughter with Cystinosis Inspires Mom

Young Daughter with Cystinosis Inspires Mom

  • Post author:Erica Zahn
  • Post published:March 28, 2016
  • Post category:Cystinosis/Rare Disease

Recently, a website called The Mighty invited its readers to write a letter to the rare disease or mental disorder that affected them or a member of their family. One mother…

Continue Reading Young Daughter with Cystinosis Inspires Mom
Pat, I’d Like to Solve the Puzzle
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Pat, I’d Like to Solve the Puzzle

  • Post author:Patient Worthy Contributor
  • Post published:March 28, 2016
  • Post category:Lyme Disease/Rare Disease

One Thursday night, I was completely emotionally wiped out. There was something that went down in my family and I spent that evening on the phone and in tears. I’m…

Continue Reading Pat, I’d Like to Solve the Puzzle
¿Por qué es Canadá, el lugar para estar con FQ?
Why Canada is the place to be for Cystic Fibrosis research.

¿Por qué es Canadá, el lugar para estar con FQ?

  • Post author:Patient Worthy Contributor
  • Post published:March 28, 2016
  • Post category:Cystic Fibrosis/Rare Disease

Oh Canadá, la gente piensa que eres todo "por favor y gracias", y el jarabe de arce, pero conozco la verdad: Eres un luchador y esa lucha es más evidente…

Continue Reading ¿Por qué es Canadá, el lugar para estar con FQ?

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