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Daily Archives: January 10, 2017

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Here’s Why You Should Start a Blog If You Haven’t Yet
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Here’s Why You Should Start a Blog If You Haven’t Yet

  • Post author:Lady Kehveen Abernathy
  • Post published:January 10, 2017
  • Post category:Aplastic anemia/Hemophilia A/Rare Disease

You know what's awesome? Blogs. They're a great medium for people to: get out their thoughts in writing educate the public teach something about which they're passionate rant about politics…

Continue Reading Here’s Why You Should Start a Blog If You Haven’t Yet
WANTED: How to Suck the Power Out of Boring Scientific Presentations
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WANTED: How to Suck the Power Out of Boring Scientific Presentations

  • Post author:Alisha Stone
  • Post published:January 10, 2017
  • Post category:Devic's Syndrome (Neuromyelitis Optica)/Rare Disease

Well, for anyone who's looking for information about neuromyelitis optica (NMO) or what’s also known as Devic’s disease or Devic’s syndrome—AND who happens to have a spare 45 minutes on…

Continue Reading WANTED: How to Suck the Power Out of Boring Scientific Presentations
Graceful, Daring, and Innovative: Her CRPS Story
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Graceful, Daring, and Innovative: Her CRPS Story

  • Post author:PW Blogger
  • Post published:January 10, 2017
  • Post category:Complex Regional Pain Syndrome/Rare Disease

Since I was very young, I have been mesmerized by the athletes in the Olympic games. The power, the grace, the dedication, and the celebration. I remained glued to my TV  for…

Continue Reading Graceful, Daring, and Innovative: Her CRPS Story
The Hidden Truth of JFK’s Addison’s Disease
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The Hidden Truth of JFK’s Addison’s Disease

  • Post author:Erica Zahn
  • Post published:January 10, 2017
  • Post category:Addison's Disease/Rare Disease

Anyone born before 1955 probably remembers exactly where they were when President John F. Kennedy (JFK) was shot. I've heard people reminisce about that moment right down to what they…

Continue Reading The Hidden Truth of JFK’s Addison’s Disease
They Did What? How IPF Doctors Deliver the Truth
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They Did What? How IPF Doctors Deliver the Truth

  • Post author:Sabina Kennedy
  • Post published:January 10, 2017
  • Post category:Idiopathic Pulmonary Fibrosis/IPF/Rare Disease

When tasked with delivering a life-changing diagnosis, it’s refreshing to hear that there are more doctors than not who understand the importance of how to share turning point news. If…

Continue Reading They Did What? How IPF Doctors Deliver the Truth

Enfermedades Raras – activismo subliminal y su importancia

  • Post author:Patient Worthy Contributor
  • Post published:January 10, 2017
  • Post category:Rare Disease

Concientización ... Activismo... Abogacía Estas son sólo algunas de las palabras que usamos para exigir medidas a cualquier persona ya sea los líderes mundiales, las industrias, los amigos o la…

Continue Reading Enfermedades Raras – activismo subliminal y su importancia
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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