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…

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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

• 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…

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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…

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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…

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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…

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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…

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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…

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