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Daily Archives: September 26, 2016

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Maroteaux-Lamy Syndrome: So Rare, So Terribly Misunderstood

Maroteaux-Lamy Syndrome: So Rare, So Terribly Misunderstood

  • Post author:Erica Zahn
  • Post published:September 26, 2016
  • Post category:MPS VI (Maroteaux-Lamy syndrome)/Rare Disease

Maroteaux-Lamy Syndrome, also known as mucopolysaccharidosis (MPSVI), is a lysosomal storage disorder. It's one of a number of disorders that affects specific enzymes in specific locations. The job of these…

Continue Reading Maroteaux-Lamy Syndrome: So Rare, So Terribly Misunderstood
Do You Know What Behcet’s, AS, and Lyme Have in Common?
[Source: pixabay.com]

Do You Know What Behcet’s, AS, and Lyme Have in Common?

  • Post author:Farrah Fontaine
  • Post published:September 26, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease/Timely

Hey Patient Worthy Community! Did you you know that September is Rheumatic Disease Awareness Month (RDAM for short!)? Well, now you do! Don't feel bad if you didn't know. This…

Continue Reading Do You Know What Behcet’s, AS, and Lyme Have in Common?
Dystonia and Nolan’s Family

Dystonia and Nolan’s Family

  • Post author:Rebekah
  • Post published:September 26, 2016
  • Post category:Dystonia/Rare Disease

I shared it with my family. I shared it with my wife, my mother and my brother of course, and they were grateful that it wasn’t something that was going to…

Continue Reading Dystonia and Nolan’s Family
What This Kid Did To SCID Will Have You Jumping For Joy

What This Kid Did To SCID Will Have You Jumping For Joy

  • Post author:James Ernest Cassady
  • Post published:September 26, 2016
  • Post category:Primary Immunodeficiencies/Rare Disease/SCID

Imagine you're a new parent and your two-month-old starts experiencing some bizarre symptoms. Along with his high fever, his skin turns red and starts peeling at an alarming rate. Multiple infections follow;…

Continue Reading What This Kid Did To SCID Will Have You Jumping For Joy
que sucede cuando un pueblo ama a sus hijos? Se viste de púrpura

que sucede cuando un pueblo ama a sus hijos? Se viste de púrpura

  • Post author:Patient Worthy Contributor
  • Post published:September 26, 2016
  • Post category:Cystinosis/Rare Disease

Cistinosis, una de las muchas enfermedades raras, genéticas en el mundo de hoy ... Como en cualquier buen artículo, el lector primero debe estar provisto de una breve historia del…

Continue Reading que sucede cuando un pueblo ama a sus hijos? Se viste de púrpura

Featured


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Metastatic Breast Cancer: Navigating Grief


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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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