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Daily Archives: January 6, 2017

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Editor’s Choice: After Diagnosis, to Med or Not to Med?

Editor’s Choice: After Diagnosis, to Med or Not to Med?

  • Post author:Patient Worthy Contributor
  • Post published:January 6, 2017
  • Post category:Cystinosis/Dystonia/HAE/Myasthenia Gravis/Rare Disease

Happy New Year Everyone! How are those resolutions coming along? This week, we have a powerful post from one of our contributors who stopped taking her meds in favor of alternative…

Continue Reading Editor’s Choice: After Diagnosis, to Med or Not to Med?
Precocious Puberty: What Should You Know About This Rare Disease?
Source: www.flickr.com

Precocious Puberty: What Should You Know About This Rare Disease?

  • Post author:PW Blogger
  • Post published:January 6, 2017
  • Post category:Central precocious puberty/Rare Disease

Childhood is a time for innocence, exploring, and fun. It has always been said that children grow up too fast and each moment should be treasured. First words, first steps,…

Continue Reading Precocious Puberty: What Should You Know About This Rare Disease?
How CF Can Keep You from Hope

How CF Can Keep You from Hope

  • Post author:Sabina Kennedy
  • Post published:January 6, 2017
  • Post category:Cystic Fibrosis

Imagine sitting in a doctor's office and hearing your child be diagnosed with cystic fibrosis (CF), or another grave illness. In this paralyzing moment, whatever was consuming your life minutes before…

Continue Reading How CF Can Keep You from Hope
There’s No One Size Fits All Approach to CAPS
Source: Pexels.com

There’s No One Size Fits All Approach to CAPS

  • Post author:Farrah Fontaine
  • Post published:January 6, 2017
  • Post category:CAPS/Rare Disease

When it comes to autoinflammatory conditions, like CAPS, there is no one size fits all approach. There are a lot of variables--that's what makes these conditions so difficult to diagnosis,…

Continue Reading There’s No One Size Fits All Approach to CAPS
The Best 5 Online Quizzes for the Narcolepsy World
Source: Pexels.com

The Best 5 Online Quizzes for the Narcolepsy World

  • Post author:Sabina Kennedy
  • Post published:January 6, 2017
  • Post category:Narcolepsy/Rare Disease

Have you looked through Google for online quizzes? Well, let me just tell you... the extensive options may blow your mind. One that I found very interesting (there were plenty…

Continue Reading The Best 5 Online Quizzes for the Narcolepsy World
la manera de clasificar la narcolepsia como una enfermedad autoinmune

la manera de clasificar la narcolepsia como una enfermedad autoinmune

  • Post author:Patient Worthy Contributor
  • Post published:January 6, 2017
  • Post category:Narcolepsy/Rare Disease

Si usted tiene narcolepsia, somnolencia diurna excesiva, y / o cataplexia, usted sabe lo difícil que puede ser para funcionar en el tiempo del "mundo real". Y mientras que los…

Continue Reading la manera de clasificar la narcolepsia como una enfermedad autoinmune

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Rethinking What It Means to Live With Acromegaly


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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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