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Daily Archives: June 21, 2016

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It’s Rare and Threatening Newborns, What Can We Do?
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It’s Rare and Threatening Newborns, What Can We Do?

  • Post author:Winnie Nash
  • Post published:June 21, 2016
  • Post category:Mucopolysaccharidosis/Rare Disease

Say what you will about genetic testing—or testing in general—but North Carolina is finally feeling out the waters when it comes to newborn testing. The state is currently piloting a study…

Continue Reading It’s Rare and Threatening Newborns, What Can We Do?
The Human Spirit and What This Bomb Chick Knows About it
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The Human Spirit and What This Bomb Chick Knows About it

  • Post author:James Ernest Cassady
  • Post published:June 21, 2016
  • Post category:Myasthenia Gravis/Rare Disease

San Angelo Live reports Keelie Brydson first noticed something was wrong in the fourth grade when, she says, "my eyelid would be really droopy." Turns out that Keelie has myasthenia…

Continue Reading The Human Spirit and What This Bomb Chick Knows About it
Ankylosing Spondylitis: Do You Know These 5 Things?
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Ankylosing Spondylitis: Do You Know These 5 Things?

  • Post author:Donald Blake
  • Post published:June 21, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Ankylosing Spondylitis (AS) is a systemic arthritis that attacks the patient's spine. In most cases, AS starts with lower back pain that is present every day for at least three…

Continue Reading Ankylosing Spondylitis: Do You Know These 5 Things?
Sad News for a Promising New Myasthenia Gravis Treatment
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Sad News for a Promising New Myasthenia Gravis Treatment

  • Post author:Ronald Ledsen
  • Post published:June 21, 2016
  • Post category:Myasthenia Gravis/Rare Disease

So this is kind of a bummer: Clinical trials looking into using Alexion Pharmaceutical’s drug Soliris for treatment-resistant generalized myasthenia gravis have just come up short of expectations. Soliris, which…

Continue Reading Sad News for a Promising New Myasthenia Gravis Treatment
Did Lyme Disease Just Get Easier to Diagnose?
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Did Lyme Disease Just Get Easier to Diagnose?

  • Post author:Donald Blake
  • Post published:June 21, 2016
  • Post category:Lyme Disease/Rare Disease

One of the most heart-wrenching aspects of Lyme disease is the lengthy process that precedes an accurate diagnosis. Healthcare providers have a difficult time getting a handle on an accurate diagnosis…

Continue Reading Did Lyme Disease Just Get Easier to Diagnose?

7 maneras de manejar tu vida con ICV

  • Post author:Patient Worthy Contributor
  • Post published:June 21, 2016
  • Post category:CVID/Rare Disease

Tras la obtención de un diagnóstico de una enfermedad crónica, como ICV o inmunodeficiencia variable común, es fácil sentirse abrumado. Abrumado por preguntas en su cabeza - ¿Qué hago ahora?…

Continue Reading 7 maneras de manejar tu vida con ICV

Featured


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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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