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Daily Archives: October 27, 2016

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How to “Eat Dance Laugh” for POTS
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How to “Eat Dance Laugh” for POTS

  • Post author:Sabina Kennedy
  • Post published:October 27, 2016
  • Post category:Dysautonomia/POTS

When I became a parent, I wasn’t acutely aware of what I was signing up for. In the beginning, my role was highly predictable and, in my mind, the newborn stage…

Continue Reading How to “Eat Dance Laugh” for POTS
How to Help CRPS Patients Get Disability Coverage

How to Help CRPS Patients Get Disability Coverage

  • Post author:Ronald Ledsen
  • Post published:October 27, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease/Timely

This past September marked the 16th annual Pain Awareness Month. First established by the American Chronic Pain Association and its partner organizations, this month is an opportunity to raise awareness…

Continue Reading How to Help CRPS Patients Get Disability Coverage
How to Score a Great Deal and Help CRPS Peeps
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How to Score a Great Deal and Help CRPS Peeps

  • Post author:EmpatheticBadass
  • Post published:October 27, 2016
  • Post category:Complex Regional Pain Syndrome/Rare Disease/Timely

If you live near La Jolla, California and have Complex Regional Pain Syndrome (CRPS)—or are a care partner for a person who does—here’s your chance to make a difference! There’s…

Continue Reading How to Score a Great Deal and Help CRPS Peeps
Tickling Tastebuds and Making a Difference to NMO
Source: Pixabay.com

Tickling Tastebuds and Making a Difference to NMO

  • Post author:EmpatheticBadass
  • Post published:October 27, 2016
  • Post category:Devic's Syndrome (Neuromyelitis Optica)/Rare Disease/Timely

If you’re a fan of the TV show MasterChef USA, you may remember Christina Ha, the contestant that cooked her way into our hearts—and into the winner’s circle!—despite the fact…

Continue Reading Tickling Tastebuds and Making a Difference to NMO
How Did This Boy Become a Rare Disease Star?
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How Did This Boy Become a Rare Disease Star?

  • Post author:Erica Zahn
  • Post published:October 27, 2016
  • Post category:MPS VI (Maroteaux-Lamy syndrome)/Rare Disease

Keenan Cahill is a YouTube sensation who just happens to have Maroteaux-Lamy syndrome. Although, after watching his channel for a half hour, he isn't letting it hold him back from…

Continue Reading How Did This Boy Become a Rare Disease Star?
The Best News for Behcet’s Treatment in a Long Time
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The Best News for Behcet’s Treatment in a Long Time

  • Post author:Farrah Fontaine
  • Post published:October 27, 2016
  • Post category:Behçet's/Panuveitis

One of the (many) issues with having Behcet's disease is that very few of the medications we use on a daily basis have ever been studied in people with our…

Continue Reading The Best News for Behcet’s Treatment in a Long Time
¿Necesita ayuda manejando una enfermedad rara? Hay una aplicación para eso
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¿Necesita ayuda manejando una enfermedad rara? Hay una aplicación para eso

  • Post author:Patient Worthy Contributor
  • Post published:October 27, 2016
  • Post category:Rare Disease

La tecnología actual nos está llevando a nuevas (in)cómodas alturas, a un ritmo que pocos les sorprenderia. Para aquellos que están viviendo con la narcolepsia, este avión no tripulado de…

Continue Reading ¿Necesita ayuda manejando una enfermedad rara? Hay una aplicación para eso

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