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Daily Archives: October 4, 2017

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New Research Leaves Glioblastoma Community Optimistic
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New Research Leaves Glioblastoma Community Optimistic

  • Post author:Sarah Lau
  • Post published:October 4, 2017
  • Post category:Glioblastoma/Rare Disease

Researchers from MIT have recently identified a new way to stop the growth of glioblastoma brain tumors, bringing renewed hope in treatment options for this rare life-threatening cancer. Glioblastoma is…

Continue Reading New Research Leaves Glioblastoma Community Optimistic
Apply for This Thalassemia Scholarship Today
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Apply for This Thalassemia Scholarship Today

  • Post author:Patient Worthy Contributor
  • Post published:October 4, 2017
  • Post category:Beta Thalassemia/Beta Thalassemia Major

October 21, 2017 Remember this deadline if you have a alpha or beta thalassemia, or another significant form of thalassemia, and are seeking an advanced degree in the US or abroad…

Continue Reading Apply for This Thalassemia Scholarship Today
Robot Goes to School for Boy with Rare Disease
Source: Pixabay

Robot Goes to School for Boy with Rare Disease

  • Post author:Andres Rovira
  • Post published:October 4, 2017
  • Post category:CAPS/FCAS

The future is now. A small robot called AV1 will allow a sick boy to experience the classroom from home. When you're diagnosed with a rare disease, it's hard to…

Continue Reading Robot Goes to School for Boy with Rare Disease
Crowd-Sourced Gastroparesis Information Can Be Useful for Discerning Readers
[Source: pixabay.com]

Crowd-Sourced Gastroparesis Information Can Be Useful for Discerning Readers

  • Post author:Al Pendleton
  • Post published:October 4, 2017
  • Post category:Gastroparesis

There is a definitive group of people out there who love to hate on message boards and crowd-sourced information websites, like wikis. Their chief complaint is that anyone can put…

Continue Reading Crowd-Sourced Gastroparesis Information Can Be Useful for Discerning Readers
How One Teen Doesn’t Let Cystic Fibrosis Stop Her Creativity
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How One Teen Doesn’t Let Cystic Fibrosis Stop Her Creativity

  • Post author:Lyssé Morganette
  • Post published:October 4, 2017
  • Post category:Cystic Fibrosis/Rare Disease

You’re used to seeing Santa at his workshop, at the mall, under your tree—but at an art exhibit? Well, for one Alaska teen living with cystic fibrosis (CF) that became a…

Continue Reading How One Teen Doesn’t Let Cystic Fibrosis Stop Her Creativity

Recent High School Grad with A1AD on the Road to Happiness, Health, Success

  • Post author:Octavia Walker
  • Post published:October 4, 2017
  • Post category:Alpha-1 Antitrypsin Deficiency

For patients, caregivers, healthcare providers, and anyone interested in learning more about liver diseases, there is a website called Focus. This website is organized by CLDF, which stands for Childhood…

Continue Reading Recent High School Grad with A1AD on the Road to Happiness, Health, Success
New Study Sheds Light on Zika Mutation
Source: Pixabay

New Study Sheds Light on Zika Mutation

  • Post author:Andres Rovira
  • Post published:October 4, 2017
  • Post category:Microcephaly

When Zika arrived in Latin America a few years ago, something about it had changed. It was different, more devastating. This was very strange, considering the disease had existed for…

Continue Reading New Study Sheds Light on Zika Mutation

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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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