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Daily Archives: October 3, 2017

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The Science and Hatred of Sound
Source: Pixabay

The Science and Hatred of Sound

  • Post author:Andres Rovira
  • Post published:October 3, 2017
  • Post category:Misophonia/Rare Disease

CLICK CLICK! For some, the mundane sound a pen clicking is simply unbearable. You could be an easily peeved person or you are probably suffering from a rare disorder known…

Continue Reading The Science and Hatred of Sound
US Government Refuses to Cover PKU, the Fight Wages On
Source: Pixabay

US Government Refuses to Cover PKU, the Fight Wages On

  • Post author:Andres Rovira
  • Post published:October 3, 2017
  • Post category:Phenylketonuria

There's a serious, rising issue brewing over health care coverage for Phenylketonuria (PKU) and it's a steaming pile of outrage. If you haven't heard of this rare disease, here's the…

Continue Reading US Government Refuses to Cover PKU, the Fight Wages On
Database Targets Cures for More than 7000 Rare Diseases: Could They Help You?
[Source: pixabay.com]

Database Targets Cures for More than 7000 Rare Diseases: Could They Help You?

  • Post author:Minden Cantrell
  • Post published:October 3, 2017
  • Post category:Rare Disease

When someone you love has a rare disease, it can be devastating. But every day more information is being amassed to help combat these often deadly conditions. One of the…

Continue Reading Database Targets Cures for More than 7000 Rare Diseases: Could They Help You?
What Stands in the Way of Gastroparesis Drug Development?
[Source: pixabay.com]

What Stands in the Way of Gastroparesis Drug Development?

  • Post author:Al Pendleton
  • Post published:October 3, 2017
  • Post category:Gastroparesis

Developing drugs for the myriad diseases that afflict humans is a complicated process. Of course, the chemistry behind developing said drugs is complex. However, deciding what diseases and dysfunctions to…

Continue Reading What Stands in the Way of Gastroparesis Drug Development?
Angels Take Flight for Gastroschisis Families
[Source: pixabay.com]

Angels Take Flight for Gastroschisis Families

  • Post author:Chloe Easterbrook
  • Post published:October 3, 2017
  • Post category:Gastroschisis/Rare Disease

Facebook can be a real time suck. Especially, when you’re looking for a distraction or for an old high school flame. However, if you’re looking for an informational, inspirational Facebook…

Continue Reading Angels Take Flight for Gastroschisis Families
New Combination Treatment for CF on the Way
Source: pixabay.com

New Combination Treatment for CF on the Way

  • Post author:Sarah Lau
  • Post published:October 3, 2017
  • Post category:Cystic Fibrosis/Rare Disease

Vertex Pharmaceuticals announced in late August that the U.S. FDA accepted applications of tezacaftor/ivacaftor for patients with cystic fibrosis (CF). Specifically, this combination treatment can be used in patients ages…

Continue Reading New Combination Treatment for CF on the Way

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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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