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Daily Archives: September 16, 2016

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Editor’s Choice: 2017’s Good News, Narcolepsy Reveal and Botox

Editor’s Choice: 2017’s Good News, Narcolepsy Reveal and Botox

  • Post author:Patient Worthy Contributor
  • Post published:September 16, 2016
  • Post category:Dystonia/HAE/Narcolepsy/Rare Disease

Welcome back Patient Worthians! Are you looking forward to 2017? Well you should be if you have HAE! Ever heard of Botox? If you have, you probably think of Hollywood…

Continue Reading Editor’s Choice: 2017’s Good News, Narcolepsy Reveal and Botox
When Pharma Hands Out Hemophilia Freebies, Are They Really Free?
Source: www.pixabay.com

When Pharma Hands Out Hemophilia Freebies, Are They Really Free?

  • Post author:Ronald Ledsen
  • Post published:September 16, 2016
  • Post category:Hemophilia A/Hemophilia B/Rare Disease

Pharmaceutical marketing can often be a very big, very sharp double-edged sword. In order to make drugs and stay in business, pharmaceutical companies have to speak to their audience, which…

Continue Reading When Pharma Hands Out Hemophilia Freebies, Are They Really Free?
Why Zellweger Syndrome is a Parent’s Worst Nightmare
Source: www.giphy.com

Why Zellweger Syndrome is a Parent’s Worst Nightmare

  • Post author:Erica Zahn
  • Post published:September 16, 2016
  • Post category:Rare Disease/Zellweger spectrum syndromes

It's not a happy story. Little Riley Brown beat the odds and celebrated his first birthday last April. Two months later, he passed away from the rare congenital disorder called…

Continue Reading Why Zellweger Syndrome is a Parent’s Worst Nightmare
What Happens When You Tell a Person with CF to Get Up and Move?
Source: www.pixabay.com

What Happens When You Tell a Person with CF to Get Up and Move?

  • Post author:PW Blogger
  • Post published:September 16, 2016
  • Post category:Cystic Fibrosis/Rare Disease

What do you think of when you hear "cystic fibrosis"? Well, if you know what it is, probably nothing good. If you don't know about cystic fibrosis and you've clicked…

Continue Reading What Happens When You Tell a Person with CF to Get Up and Move?
Esta cura podria morir, Aquí hay 3 razones por qué

Esta cura podria morir, Aquí hay 3 razones por qué

  • Post author:
  • Post published:September 16, 2016
  • Post category:Rare Disease

  Cuando la Cámara de Representantes aprobó una ley innovadora, Ley de Curas siglo 21, en un voto de 344-77 voto, la decisión se sentía como un desfibrilador, el despliegue…

Continue Reading Esta cura podria morir, Aquí hay 3 razones por qué

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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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