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Daily Archives: November 17, 2016

Home » Archives for November 17, 2016
Baby Rosemary’s Plea

Baby Rosemary’s Plea

  • Post author:Rebekah
  • Post published:November 17, 2016
  • Post category:Ehlers-Danlos Syndrome/Rare Disease/Timely

Rare disease mom Bobbie recently had a new baby. While she is overjoyed at the latest addition to her family, she is fearing for her baby daughter's life. Her family…

Continue Reading Baby Rosemary’s Plea
Useful and Helpful Tips for Rare Polycythemia Vera
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Useful and Helpful Tips for Rare Polycythemia Vera

  • Post author:Sabina Kennedy
  • Post published:November 17, 2016
  • Post category:Myelodysplastic syndromes/Polycythemia vera/Rare Disease

Have you ever heard of polycythemia vera (PV)? Me neither, and that’s why I had to do some digging. There were quite a few facts that carried some heart-string shock…

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Gastroschisis: Learn a Little, Love a Little
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Gastroschisis: Learn a Little, Love a Little

  • Post author:Kathy Devanny
  • Post published:November 17, 2016
  • Post category:Gastroschisis/Timely

Gastroschisis is a birth defect where the intestines and sometimes other abdominal organs such as the stomach or liver are outside the body, rather than inside. This used to come as…

Continue Reading Gastroschisis: Learn a Little, Love a Little
Fighting Rare Disease Pain the Cannabis Way
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Fighting Rare Disease Pain the Cannabis Way

  • Post author:Farrah Fontaine
  • Post published:November 17, 2016
  • Post category:Autoinflammatory Disease/Rare Disease/Timely

As more states open their arms to the wonders of marijuana (for medical purposes and for fun), they're also opening up a whole new way to look at treating rare…

Continue Reading Fighting Rare Disease Pain the Cannabis Way
This is the Kind of Appreciation Good Doctors and Nurses Deserve
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This is the Kind of Appreciation Good Doctors and Nurses Deserve

  • Post author:Lady Kehveen Abernathy
  • Post published:November 17, 2016
  • Post category:Primary Pulmonary Hypertension/Rare Disease

Here at Patient Worthy, we've written a few articles about misdiagnoses and how sometimes, doctors just aren't doing their jobs. But I think it's about time we honor the good…

Continue Reading This is the Kind of Appreciation Good Doctors and Nurses Deserve
An All-Too-Common Liver Disease May Soon Meet Its Match
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An All-Too-Common Liver Disease May Soon Meet Its Match

  • Post author:James Ernest Cassady
  • Post published:November 17, 2016
  • Post category:Nonalcoholic steatohepatitis/Rare Disease/Timely

In honor of liver awareness month, we've got some good news for people living with NASH, or nonalcoholic steatohepatitis. NASH is a kind of fatty-liver disease that is not connected to…

Continue Reading An All-Too-Common Liver Disease May Soon Meet Its Match
What to Know About Coordination of Rare Diseases at Sanford

What to Know About Coordination of Rare Diseases at Sanford

  • Post author:Patient Worthy Contributor
  • Post published:November 17, 2016
  • Post category:Rare Disease/Timely

Patient Worthy™ had the unique opportunity to talk to the Coordination of Rare Diseases at Sanford, or CoRDS. Check out the interview below. 1) Can you tell us a little about…

Continue Reading What to Know About Coordination of Rare Diseases at Sanford
La distonía cervical esta en tu imaginacion – Ahora asi es como lo manejas
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La distonía cervical esta en tu imaginacion – Ahora asi es como lo manejas

  • Post author:Patient Worthy Contributor
  • Post published:November 17, 2016
  • Post category:Dystonia/Rare Disease

Hay una famosa frase de Harry Potter y las reliquias de la muerte, cuando (* SPOILER ALERT *) Harry habla con el fantasma Dumbledore por última vez. Atrapado en un…

Continue Reading La distonía cervical esta en tu imaginacion – Ahora asi es como lo manejas

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