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Daily Archives: September 12, 2016

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In an Amazing Turn of Events, Fabry Treatment is About to Improve
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In an Amazing Turn of Events, Fabry Treatment is About to Improve

  • Post author:Erica Zahn
  • Post published:September 12, 2016
  • Post category:Fabry Disease/Rare Disease

What if you had an inherited disorder that caused a fat called globotriaosylceramide to build up in your cells? Chances are pretty good that you'd be diagnosed with Fabry disease,…

Continue Reading In an Amazing Turn of Events, Fabry Treatment is About to Improve
Why EB is the Worst Disease You’ve Never Heard Of
Source: www.pixabay.com

Why EB is the Worst Disease You’ve Never Heard Of

  • Post author:Erica Zahn
  • Post published:September 12, 2016
  • Post category:Epidermolysis Bullosa/Rare Disease

Epidermolysis Bullosa, or EB, is a connective tissue disorder that approximately 200 babies are born with each year. The most serious symptom is the extreme fragility of skin. People with EB suffer…

Continue Reading Why EB is the Worst Disease You’ve Never Heard Of
Nolan’s Dystonia Symptoms

Nolan’s Dystonia Symptoms

  • Post author:Patient Worthy Contributor
  • Post published:September 12, 2016
  • Post category:Dystonia/Rare Disease

I think, the earliest I can remember of any issues that I was having with dystonia were just not being able to hold a drumstick or a mallet. I used…

Continue Reading Nolan’s Dystonia Symptoms
Esto es lo más parecido a la vision x-ray de Superman que jamas tendrás
Pixabay

Esto es lo más parecido a la vision x-ray de Superman que jamas tendrás

  • Post author:Patient Worthy Contributor
  • Post published:September 12, 2016
  • Post category:CVID/Rare Disease

Si usted es uno de los aproximadamente 1 de cada 25.000 a 50.000 personas en los EE.UU. que viven con inmunodeficiencia variable común (ICV), inyecciones regulares IV son un hecho…

Continue Reading Esto es lo más parecido a la vision x-ray de Superman que jamas tendrás

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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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