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Daily Archives: January 7, 2016

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#NewYearNewMe: Turning Grief Into Happiness When Chronically Ill

#NewYearNewMe: Turning Grief Into Happiness When Chronically Ill

  • Post author:Patient Worthy Contributor
  • Post published:January 7, 2016
  • Post category:Dysautonomia/POTS/Rare Disease

So here we are. A new year. 2016: A year for new hope and new potential. I've seen so many friends and family make these "New Year, New Me” New…

Continue Reading #NewYearNewMe: Turning Grief Into Happiness When Chronically Ill
Cancer? Dystonia? I’ll Do What Makes Me Happy

Cancer? Dystonia? I’ll Do What Makes Me Happy

  • Post author:James Ernest Cassady
  • Post published:January 7, 2016
  • Post category:Dystonia/Rare Disease

Todd Hart's name should really be Badass McGee. A triathlete, Hart completed the 2009 Boilermaker 15k in 58:22. (The race's site bills it as "the most competitive 15k road race…

Continue Reading Cancer? Dystonia? I’ll Do What Makes Me Happy
Quiz Yourself on CAPS!

Quiz Yourself on CAPS!

  • Post author:James Stone
  • Post published:January 7, 2016
  • Post category:CAPS/Rare Disease

[mlw_quizmaster quiz=1] Share this quiz with people you know who might know a thing or two about CAPS.

Continue Reading Quiz Yourself on CAPS!
SCID’s Come a Long Way, Thanks to the Boy in the Bubble

SCID’s Come a Long Way, Thanks to the Boy in the Bubble

  • Post author:Ronald Ledsen
  • Post published:January 7, 2016
  • Post category:Primary Immunodeficiencies/Rare Disease/SCID

A couple of months ago we took a look at the legacy of David Vetter, the “Boy in the Plastic Bubble” whose lifelong battle with Severe Combined Immunodeficiency (SCID) caught…

Continue Reading SCID’s Come a Long Way, Thanks to the Boy in the Bubble
It Ain’t No Miracle, But Free Tests for CGD Will Make You Smile

It Ain’t No Miracle, But Free Tests for CGD Will Make You Smile

  • Post author:Alisha Stone
  • Post published:January 7, 2016
  • Post category:CGD/Primary Immunodeficiencies/Rare Disease

I am jumping for joy after learning there’s new hope for people in the CGD community! In October 2015, Horizon Pharma, headquartered in Dublin, Ireland, announced they will be opening…

Continue Reading It Ain’t No Miracle, But Free Tests for CGD Will Make You Smile

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