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Daily Archives: October 20, 2017

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Editor’s Choice: You’re Going to Be Elated!… Then You’re Going to Get Angry.

Editor’s Choice: You’re Going to Be Elated!… Then You’re Going to Get Angry.

  • Post author:Patient Worthy Contributor
  • Post published:October 20, 2017
  • Post category:Rare Disease

Happy Friday Patient Worthians! This week, we some news to be happy about! We have an awesome story of how thinking like a start up will help lead to more…

Continue Reading Editor’s Choice: You’re Going to Be Elated!… Then You’re Going to Get Angry.
Toddler With Guillain-Barre Syndrome Makes Heartwarming Recovery

Toddler With Guillain-Barre Syndrome Makes Heartwarming Recovery

  • Post author:Patient Worthy Contributor
  • Post published:October 20, 2017
  • Post category:Guillain Barré syndrome/Rare Disease

Two-year-old Max Payne from Immingham, England, holds onto the yellow rail of his play pen as he stands up. He glances up at the video camera for a moment, and then…

Continue Reading Toddler With Guillain-Barre Syndrome Makes Heartwarming Recovery
Teamwork to Make the CGD Treatment Dream Work
geralt / Pixabay

Teamwork to Make the CGD Treatment Dream Work

  • Post author:Al Pendleton
  • Post published:October 20, 2017
  • Post category:Chronic Granulmatous Disease/Sickle cell anemia

There’s been a lot of talk in recent years about interdisciplinary projects. The idea is to put together people with different skillsets to address problems. The goal is for everyone…

Continue Reading Teamwork to Make the CGD Treatment Dream Work
How This Man Uses Technology to Improve His Life with Stargardt Disease
Comfreak / Pixabay

How This Man Uses Technology to Improve His Life with Stargardt Disease

  • Post author:Al Pendleton
  • Post published:October 20, 2017
  • Post category:Stargardt Disease

I hear a lot of talk about technology these days. There seems to be a growing group of people who argue that it creates more problems than it solves. It…

Continue Reading How This Man Uses Technology to Improve His Life with Stargardt Disease
The Road to Graduation with Misophonia Isn’t Easy
Source: Pixabay

The Road to Graduation with Misophonia Isn’t Easy

  • Post author:Andres Rovira
  • Post published:October 20, 2017
  • Post category:Misophonia

Lucy Babcock is in her fourth year in college and so close to acquiring that diploma and pursuing grad school. Most people suffer from senioritis but Lucy is battling out…

Continue Reading The Road to Graduation with Misophonia Isn’t Easy
Help This Little Girl Battling Moebius Syndrome Get a New Heart
Source: Pixabay

Help This Little Girl Battling Moebius Syndrome Get a New Heart

  • Post author:Andres Rovira
  • Post published:October 20, 2017
  • Post category:hypoplastic left heart syndrome/Moebius Syndrome

Lily Ayres, at the ripe age of 2, has been fighting a rare disease ever since she was born. Little Lily suffers from Moebius syndrome and because of it, she…

Continue Reading Help This Little Girl Battling Moebius Syndrome Get a New Heart
Pediatric Stroke Warriors are Mighty and Making a Difference
Source: Pixabay

Pediatric Stroke Warriors are Mighty and Making a Difference

  • Post author:Andres Rovira
  • Post published:October 20, 2017
  • Post category:Lennox-Gastaut syndrome

The Pediatric Stroke Warriors were formed in 2015 and have thus grown into the biggest childhood stroke nonprofit out of the Pacific Northwest Region. Their mission is to strengthen communities…

Continue Reading Pediatric Stroke Warriors are Mighty and Making a Difference
The Mentor She Wished She Had - How Elizabeth Became a Lifeline for EB
Finding Strength Together: Scott and Katie’s Journey with Advanced Kidney
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
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