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Daily Archives: February 17, 2016

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Battle for the Blades Scores Big for Cystinosis

Battle for the Blades Scores Big for Cystinosis

  • Post author:Kiki Jones
  • Post published:February 17, 2016
  • Post category:Cystinosis

Winters may be long in Canada, but the residents of Ontario’s Saugeen Shores are hardly cold-hearted. On April 1st, 2016, the Saugeen Shores Skating Club is inviting Ex-NHL players, figure…

Continue Reading Battle for the Blades Scores Big for Cystinosis
An Inspiration Porn Rant: POTS Spelled Backward is STOP!

An Inspiration Porn Rant: POTS Spelled Backward is STOP!

  • Post author:Ronald Ledsen
  • Post published:February 17, 2016
  • Post category:POTS/Rare Disease

This one may not be fresh and recent, but it’s worth another look. It’s kind of an “oldie but goodie,” if you will. And it’s also about damn time someone…

Continue Reading An Inspiration Porn Rant: POTS Spelled Backward is STOP!
If I Speak Up About CVID, Do I Really Make a Sound?

If I Speak Up About CVID, Do I Really Make a Sound?

  • Post author:James Ernest Cassady
  • Post published:February 17, 2016
  • Post category:CVID/Rare Disease

"I AM FEELING LIKE I MAY NOT EVER MAKE A DIFFERENCE." Through the power of the Internet (blogs, videos, message boards, or what have you) those living with rare diseases have the…

Continue Reading If I Speak Up About CVID, Do I Really Make a Sound?
Chronic Disease is like a Bad Boyfriend (Video Series)

Chronic Disease is like a Bad Boyfriend (Video Series)

  • Post author:Patient Worthy Contributor
  • Post published:February 17, 2016
  • Post category:Rare Disease

Welcome to the third of many posts related to Patient Worthy’s Video Series! We had the pleasure of interviewing PW contributor Kathryn Ferguson, a mother and a wife, who has been diagnosed…

Continue Reading Chronic Disease is like a Bad Boyfriend (Video Series)
Conozcamos a Lisa Copen: La Voz de la Concienciación de las Enfermedades Invisibles

Conozcamos a Lisa Copen: La Voz de la Concienciación de las Enfermedades Invisibles

  • Post author:Patient Worthy Contributor
  • Post published:February 17, 2016
  • Post category:Rare Disease

Mi nombre es Lisa y yo vivo con la artritis reumatoide (AR) y la fibromialgia. #myinvisiblefight está en curso, pero tengo fe, la familia y los amigos. Esta es mi…

Continue Reading Conozcamos a Lisa Copen: La Voz de la Concienciación de las Enfermedades Invisibles

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