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Daily Archives: August 22, 2016

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Do You Ever Wonder What’s Happening Down Under?
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Do You Ever Wonder What’s Happening Down Under?

  • Post author:Erica Zahn
  • Post published:August 22, 2016
  • Post category:Pompe Disease/Rare Disease

Pompe disease is one of those rare disorders that progresses steadily over the course of a person's life. Patients are lacking the enzyme that breaks down glycogen, and the build-up of…

Continue Reading Do You Ever Wonder What’s Happening Down Under?
What Parents-to-Be Need to Know About Genetic Testing and Race
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What Parents-to-Be Need to Know About Genetic Testing and Race

  • Post author:Kiki Jones
  • Post published:August 22, 2016
  • Post category:Dysautonomia/Gaucher Disease/POTS/Rare Disease

Race and ethnicity is a touchy subject—and rightfully so—but that doesn’t mean it shouldn’t be discussed, especially in terms of healthcare. The fact is, certain genetic diseases pop up in…

Continue Reading What Parents-to-Be Need to Know About Genetic Testing and Race
You’ll be Astonished to Know Things Are Looking Up for Pompe
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You’ll be Astonished to Know Things Are Looking Up for Pompe

  • Post author:Erica Zahn
  • Post published:August 22, 2016
  • Post category:Pompe Disease/Rare Disease

Pompe disease an inherited neuromuscular disorder that is caused by certain gene mutations, particularly in the gene that makes acid alpha-glucosidase (GAA). In Pompe's most severe form, it's often fatal because…

Continue Reading You’ll be Astonished to Know Things Are Looking Up for Pompe
Hemophilia: When Bad Viruses Do Good Things
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Hemophilia: When Bad Viruses Do Good Things

  • Post author:Erica Zahn
  • Post published:August 22, 2016
  • Post category:Hemophilia B/Rare Disease

A cure may be just around the corner for people who have hemophilia B. And anytime the word "cure" appears in a sentence with a disease state, there's cause for…

Continue Reading Hemophilia: When Bad Viruses Do Good Things
una visita al quiropráctico para mi espondilitis anquilosante!?

una visita al quiropráctico para mi espondilitis anquilosante!?

  • Post author:Patient Worthy Contributor
  • Post published:August 22, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

No puedo decirle cuántas conversaciones que he escuchado entre alguien vivir con una enfermedad crónica y un escéptico que simplemente está desconcertado por lo que están escuchando. Para muchos en…

Continue Reading una visita al quiropráctico para mi espondilitis anquilosante!?

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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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