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Daily Archives: February 7, 2017

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Hey, Buddy, Can You Spare a Joke for AS?
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Hey, Buddy, Can You Spare a Joke for AS?

  • Post author:Erica Zahn
  • Post published:February 7, 2017
  • Post category:Ankylosing Spondylitis/Rare Disease

A story I read about a man with ankylosing spondylitis (AS) brought back a great memory for me. A few years ago, I was spending a lonely New Year's Eve…

Continue Reading Hey, Buddy, Can You Spare a Joke for AS?
Big Changes for DMD Community: Innovative Research and Beer
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Big Changes for DMD Community: Innovative Research and Beer

  • Post author:Sabina Kennedy
  • Post published:February 7, 2017
  • Post category:Duchenne Muscular Dystrophy/Rare Disease

If you’re like most people (especially me), you’ve never heard of nicotinamide riboside (NR) before. But that may change very soon, especially for the Duchenne muscular dystrophy (DMD) community. What…

Continue Reading Big Changes for DMD Community: Innovative Research and Beer
Did You Know?! Primary Immunodeficiency Does NOT Have to Suck
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Did You Know?! Primary Immunodeficiency Does NOT Have to Suck

  • Post author:Sabina Kennedy
  • Post published:February 7, 2017
  • Post category:Rare Disease

Since a young age, many of us have searched for something—a hobby, a passion, a quirk—that "defines” us. Much like the pursuits of Angela Van Batavia, a middle school teacher,…

Continue Reading Did You Know?! Primary Immunodeficiency Does NOT Have to Suck
Why MPS VI Will Make You Adapt a Positive Attitude
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Why MPS VI Will Make You Adapt a Positive Attitude

  • Post author:Sabina Kennedy
  • Post published:February 7, 2017
  • Post category:MPS VI (Maroteaux-Lamy syndrome)

Life is a reflection of our attitude, and we can learn a thing or two from Alena Galan, a young woman who’s living the dream as a college freshman, hosting…

Continue Reading Why MPS VI Will Make You Adapt a Positive Attitude
This Valentine’s Day You Can Give More Than Just Roses
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This Valentine’s Day You Can Give More Than Just Roses

  • Post author:Patient Worthy Contributor
  • Post published:February 7, 2017
  • Post category:Rare Disease

When I was 15 and received my learner's permit, they asked if I'd like to be an organ donor. I was a little freaked out at the image of getting…

Continue Reading This Valentine’s Day You Can Give More Than Just Roses

Featured


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Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


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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