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Daily Archives: November 27, 2015

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Editor’s Choice Weekend Roundup: It’s Thanksgiving Week!
WeekendRoundUp 11.27.2015

Editor’s Choice Weekend Roundup: It’s Thanksgiving Week!

  • Post author:Patient Worthy Contributor
  • Post published:November 27, 2015
  • Post category:Dysautonomia/POTS/Rare Disease

Happy Day-After-Thanksgiving PatientWorthians! Around this time of year, we like to emphasize the amazing gratitude in the chronic disease world. Living with a chronic illness is often a serious bummer, to…

Continue Reading Editor’s Choice Weekend Roundup: It’s Thanksgiving Week!

Exhibit Puts the Powerful Faces of Rare Disease in the Spotlight

  • Post author:Kiki Jones
  • Post published:November 27, 2015
  • Post category:Rare Disease

Did you know that there are over 7,000 rare diseases, and 1 in 10 Americans has one? When you're part of a small patient population, it's hard to get noticed.…

Continue Reading Exhibit Puts the Powerful Faces of Rare Disease in the Spotlight

Why Is This Woman So Upbeat in the Face of EDS?

  • Post author:Ronald Ledsen
  • Post published:November 27, 2015
  • Post category:Dysautonomia/Ehlers-Danlos Syndrome/Rare Disease

If rare diseases were participating in a beauty pageant—where “beauty” means “little known,” “poorly understood,” and “damn near impossible to diagnose”—Ehlers-Danlos Syndrome (EDS) would be right up there among the…

Continue Reading Why Is This Woman So Upbeat in the Face of EDS?
New Drug May Help the Badass Pain Warriors of CRPS
CRPS drug in Italy could help relieve pain. Pixabay

New Drug May Help the Badass Pain Warriors of CRPS

  • Post author:Winnie Nash
  • Post published:November 27, 2015
  • Post category:Complex Regional Pain Syndrome/Rare Disease

Colossal pain. Mammoth swelling. Hypersensitivity. Drastic changes in body temperature. Imagine being in that kind of pain all the time. Frankly, it sounds a little like a nightmare.   Well,…

Continue Reading New Drug May Help the Badass Pain Warriors of CRPS

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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


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The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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