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Daily Archives: September 29, 2017

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Editor’s Choice: Who Says Video Games are Bad for You?

Editor’s Choice: Who Says Video Games are Bad for You?

  • Post author:Patient Worthy Contributor
  • Post published:September 29, 2017
  • Post category:Rare Disease

It's Fall "Y'all"! This week, we have PW Contribution from a man with CMT. We also have one on raising a child with rare disease. We also have good news…

Continue Reading Editor’s Choice: Who Says Video Games are Bad for You?
High Hopes for Huntington Study Group’s Research Conference
Source: Pixabay

High Hopes for Huntington Study Group’s Research Conference

  • Post author:Patient Worthy Contributor
  • Post published:September 29, 2017
  • Post category:Huntington's disease

HSG 2017 is coming your way Denver! The Huntington Study Group (HSG) is a global professional group dedicated to finding better treatments and ultimately a cure for Huntington Disease (HD). They…

Continue Reading High Hopes for Huntington Study Group’s Research Conference
Out of the Hurricane and Into a Coma
Source: Pixabay

Out of the Hurricane and Into a Coma

  • Post author:Andres Rovira
  • Post published:September 29, 2017
  • Post category:Sturge-Weber Syndrome

Amber and Ryan Dollinger were preparing for the birth of their second son just as Hurricane Harvey was plowing toward them dead-on. They fled their Beaumont, Texas home and found…

Continue Reading Out of the Hurricane and Into a Coma
Parenting a Child with Rare Disease: The Trials and Tribulations
Source: Pixabay

Parenting a Child with Rare Disease: The Trials and Tribulations

  • Post author:Andres Rovira
  • Post published:September 29, 2017
  • Post category:Congenital central hypoventilation syndrome

This is the story of Eddie and Sarah Yang, their children, and challenges they face with a rare disease called congenital central hypoventilation syndrome (CCHS). Eddie and Sarah married in…

Continue Reading Parenting a Child with Rare Disease: The Trials and Tribulations
Why You Should Support This UK Fundraiser for Boy with Microcephaly
Source: Pixabay

Why You Should Support This UK Fundraiser for Boy with Microcephaly

  • Post author:Andres Rovira
  • Post published:September 29, 2017
  • Post category:Microcephaly

In a small UK Village, locals will be congregating at a popular pub to raise money for a disabled and epileptic boy whose family cannot afford his medical gear. Microcephaly…

Continue Reading Why You Should Support This UK Fundraiser for Boy with Microcephaly
ALD Newborn Screening May Eradicate This Life-Stealing Disease
Source: Pixabay

ALD Newborn Screening May Eradicate This Life-Stealing Disease

  • Post author:Minden Cantrell
  • Post published:September 29, 2017
  • Post category:Adrenoleukodystrophy/Rare Disease

Sometimes it takes a tragedy to create real change. Last year, Connecticut joined the short list of states to implement an ALD newborn screening test, after the parents of a…

Continue Reading ALD Newborn Screening May Eradicate This Life-Stealing Disease

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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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