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Daily Archives: May 31, 2016

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Around the World, People are Demanding More for AS
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Around the World, People are Demanding More for AS

  • Post author:Ronald Ledsen
  • Post published:May 31, 2016
  • Post category:Ankylosing Spondylitis/Rare Disease

Here’s some interesting news for anyone living with ankylosing spondylitis (AS): A growing prevalence in AS around the globe has translated into increased spending on—and development of—more reliable treatments. Persistence…

Continue Reading Around the World, People are Demanding More for AS
What Profound Truth Bombs Did Empire Drop About Rare Disease?
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What Profound Truth Bombs Did Empire Drop About Rare Disease?

  • Post author:Kiki Jones
  • Post published:May 31, 2016
  • Post category:Myasthenia Gravis/Rare Disease

Between all the murder, betrayal, and Shakespearean-esque drama, no one would say Fox’s breakthrough, musical-hit Empire represents reality. But one can argue the show represents an important step forward for the…

Continue Reading What Profound Truth Bombs Did Empire Drop About Rare Disease?
Better Prognosis For Cystinosis

Better Prognosis For Cystinosis

  • Post author:Kristen Lord
  • Post published:May 31, 2016
  • Post category:Cystinosis

Cystinosis is most often diagnosed before the age of two. Through medical advances over the last 20 years the prognosis for those with cystinosis has improved. Now more and more…

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When Mom is Sick
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When Mom is Sick

  • Post author:Patient Worthy Contributor
  • Post published:May 31, 2016
  • Post category:Rare Disease/Sjogren's Syndrome

The old saying goes "When momma ain't happy, ain't nobody happy." And we all laugh a bit because there is a trace of truth in it. But what about when momma…

Continue Reading When Mom is Sick
Perdiendo el tren acerca del AEH

Perdiendo el tren acerca del AEH

  • Post author:Patient Worthy Contributor
  • Post published:May 31, 2016
  • Post category:HAE/Rare Disease

Las víctimas de la enfermedad rara y potencialmente mortal angioedema hereditario (AEH) están levantando banderas rojas debido Australia se está quedando atrás en el diagnóstico y tratamiento de la enfermedad.…

Continue Reading Perdiendo el tren acerca del AEH

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