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Monthly Archives: July 2015

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CVID Survivor Leaves Her Life in the Hands of Strangers

CVID Survivor Leaves Her Life in the Hands of Strangers

  • Post author:Patient Worthy Contributor
  • Post published:July 10, 2015
  • Post category:CVID/Rare Disease

Vanessa Garrett, a woman with Crohn’s disease, common variable immunodeficiency (CVID), and Hereditary Leiomyomatosis and Renal Cell Cancer (HLRCC), is grateful for her life despite her circumstances. Her family is…

Continue Reading CVID Survivor Leaves Her Life in the Hands of Strangers

Breakthrough DNA Test Trades Your Privacy for Security

  • Post author:Patient Worthy Contributor
  • Post published:July 9, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

With seven billion people in the world, there's a lot that makes us different from one another-- wealth, geographic location, family, interests. But our common ground? The ultimate equalizer of…

Continue Reading Breakthrough DNA Test Trades Your Privacy for Security

Poll: Is it Time to Make Cures Our #1 Priority?

  • Post author:Patient Worthy Contributor
  • Post published:July 9, 2015
  • Post category:Rare Disease

The Congress backed 21st Century Cures Act will be making its way to the House or Representatives' desks this week. After receiving a 51-0 unanimous vote from the The House…

Continue Reading Poll: Is it Time to Make Cures Our #1 Priority?

How To Improve Ankylosing Spondylitis Comfort in 3 Steps

  • Post author:PW Blogger
  • Post published:July 6, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Honestly, who doesn’t love lists? And lists about how to better manage Ankylosing Spondylitis? Even better. So luckily for us, Everyday Health showcases tons of lists about managing life with AS,…

Continue Reading How To Improve Ankylosing Spondylitis Comfort in 3 Steps
Doctors Couldn’t Detect Her Pain, Until This
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Doctors Couldn’t Detect Her Pain, Until This

  • Post author:Patient Worthy Contributor
  • Post published:July 1, 2015
  • Post category:Ankylosing Spondylitis/Rare Disease

Lisa Marie Basile finds living with an auto-immune disease frustrating. She also had a hard time getting a diagnosis because, as she says, "...many autoimmune disorders don't come with a…

Continue Reading Doctors Couldn’t Detect Her Pain, Until This
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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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