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Daily Archives: November 24, 2017

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Editor’s Choice: When the FDA Approves Drugs Just in Time for Thanksgiving

Editor’s Choice: When the FDA Approves Drugs Just in Time for Thanksgiving

  • Post author:Patient Worthy Contributor
  • Post published:November 24, 2017
  • Post category:Rare Disease

Happy Thanksgiving Patient Worthians! While you're still digesting, take a look at what we have in store for you this week. If you have EDS, we have some exercise tips…

Continue Reading Editor’s Choice: When the FDA Approves Drugs Just in Time for Thanksgiving
What People Without Juvenile Arthritis Can’t See
Source: Pixabay

What People Without Juvenile Arthritis Can’t See

  • Post author:Patient Worthy Contributor
  • Post published:November 24, 2017
  • Post category:Juvenile idiopathic arthritis/Rare Disease

Living with a chronic illness is hard enough. When you have juvenile idiopathic arthritis, you learn to manage pain and health issues at an age when most of your peers…

Continue Reading What People Without Juvenile Arthritis Can’t See
A Little One with Citrullinemia Gets Gift of a Lifetime in Time for the Holidays
NatWhitePhotography / Pixabay

A Little One with Citrullinemia Gets Gift of a Lifetime in Time for the Holidays

  • Post author:Chloe Easterbrook
  • Post published:November 24, 2017
  • Post category:Rare Disease

What do restored clawfoot tubs, spelunking meetups, and first-grade school pictures have in common? They can all be found on social media sites on the internet. But other than connecting…

Continue Reading A Little One with Citrullinemia Gets Gift of a Lifetime in Time for the Holidays
Teen Entrepreneur Isn’t Letting POTS Stop Him
Source: Pixabay

Teen Entrepreneur Isn’t Letting POTS Stop Him

  • Post author:Katie Campbell
  • Post published:November 24, 2017
  • Post category:Dysautonomia/POTS/Rare Disease

For people with postural orthostatic tachycardia syndrome (POTS), everyday activities can sap a lot of strength. POTS is a form of dysautonomia that is characterized by a shortage of blood…

Continue Reading Teen Entrepreneur Isn’t Letting POTS Stop Him
Know All About It! Register for Hypereosinophilic Syndrome Conference in March 2018
fill / Pixabay

Know All About It! Register for Hypereosinophilic Syndrome Conference in March 2018

  • Post author:Chloe Easterbrook
  • Post published:November 24, 2017
  • Post category:Event/Hypereosinophilic syndrome/Rare Disease

No one knows how difficult living with hypereosinophilic syndrome (HES) is unless you walk in the shoes of those who have it, treat it, or have a loved one who…

Continue Reading Know All About It! Register for Hypereosinophilic Syndrome Conference in March 2018
Rare Disease Warrior Gets Recognition
Source: Pixabay

Rare Disease Warrior Gets Recognition

  • Post author:Andres Rovira
  • Post published:November 24, 2017
  • Post category:Spinal Muscular Atrophy

A rare disease patient is getting the recognition she deserves for her fearless outlook on death and her refusal to submit to affliction. On Sunday, the winners were announced for…

Continue Reading Rare Disease Warrior Gets Recognition
What It’s Like to Get Married in a Care Center

What It’s Like to Get Married in a Care Center

  • Post author:Patient Worthy Contributor
  • Post published:November 24, 2017
  • Post category:Myotonic Dystrophy/Rare Disease

People find love in endless different ways. Some people meet their romantic partner through dating apps and singles groups, others meet at work or social gatherings. One place you don't…

Continue Reading What It’s Like to Get Married in a Care Center
Misophonia Sufferer Copes Through Artwork
Source: Pixabay

Misophonia Sufferer Copes Through Artwork

  • Post author:Andres Rovira
  • Post published:November 24, 2017
  • Post category:Misophonia/Timely

Jessica Gilbert uses her rare neurological disorder as fuel for her creativity. The Converse College student suffers from misophonia, which translates into "the hatred of sound." People who suffer from…

Continue Reading Misophonia Sufferer Copes Through Artwork

Featured


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Metastatic Breast Cancer: Navigating Grief


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Rethinking What It Means to Live With Acromegaly


Illustration of mentor program members


The Let’s Chat CAR T One-on-One Mentor Program: Speaking with Someone Who Understands What You Are Going Through

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