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Daily Archives: August 31, 2017

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Father’s Love for His Daughter Stronger than Medical Malpractice
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Father’s Love for His Daughter Stronger than Medical Malpractice

  • Post author:Al Pendleton
  • Post published:August 31, 2017
  • Post category:Protein C deficiency/Rare Disease

The love between a father and his daughter is pretty unique. You may remember the story from a few years back of Emily Heaton asking her father, Jeremiah, if she…

Continue Reading Father’s Love for His Daughter Stronger than Medical Malpractice
Multiple Myeloma May Have a New Warrior Soon
Source: www.pixabay.com

Multiple Myeloma May Have a New Warrior Soon

  • Post author:Al Pendleton
  • Post published:August 31, 2017
  • Post category:Multiple Myeloma/Rare Disease

Cancer treatment, much like golf, is all about the follow-through. It is true that chemotherapy and surgery are important. However, it’s the maintenance therapies that keep people living for years…

Continue Reading Multiple Myeloma May Have a New Warrior Soon
Is This Hi-Tech Diagnostic Tool the Final Frontier of Medicine?
Source: Pixabay

Is This Hi-Tech Diagnostic Tool the Final Frontier of Medicine?

  • Post author:Minden Cantrell
  • Post published:August 31, 2017
  • Post category:Rare Disease

Confession time: I was a Trekkie. Yes, I lusted after Captain Kirk. But deep down my heart belonged to Bones, the smack-talking ship's chief medical officer who often saved the…

Continue Reading Is This Hi-Tech Diagnostic Tool the Final Frontier of Medicine?
CF Patients May Have Early Warning System For Hearing Loss
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CF Patients May Have Early Warning System For Hearing Loss

  • Post author:Chloe Easterbrook
  • Post published:August 31, 2017
  • Post category:Cystic Fibrosis/Rare Disease

With the creation of a new hearing test, researchers in the United Kingdom may be one step closer to diagnosing early hearing loss in young patients with cystic fibrosis (CF),…

Continue Reading CF Patients May Have Early Warning System For Hearing Loss
Bestie Saves Life With An Unexpected Acromegaly Diagnosis
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Bestie Saves Life With An Unexpected Acromegaly Diagnosis

  • Post author:Minden Cantrell
  • Post published:August 31, 2017
  • Post category:Acromegaly/Rare Disease

It pays to have a friend who's a research endrocrinologist—especially when you have a rare and little-known disease like acromegaly. For Oregon-based teacher, Betsy Whispell, the friendship was a lifesaver. She…

Continue Reading Bestie Saves Life With An Unexpected Acromegaly Diagnosis
Groundbreaking FDA Approval for This Cancer Gene Therapy
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Groundbreaking FDA Approval for This Cancer Gene Therapy

  • Post author:Octavia Walker
  • Post published:August 31, 2017
  • Post category:Mantle Cell Lymphoma/Marginal Zone Lymphoma

Little Emily Whitehead is looking attentively at a butterfly that has landed on her finger. She coos at it and lets it rest on the tip of her thumb peacefully.…

Continue Reading Groundbreaking FDA Approval for This Cancer Gene Therapy
Why Disease is an Inside Job: Microbiome Researchers Crack the Code
[Source: pixabay.com]

Why Disease is an Inside Job: Microbiome Researchers Crack the Code

  • Post author:Minden Cantrell
  • Post published:August 31, 2017
  • Post category:Cystic Fibrosis/Rare Disease

There's a whole lot more going on in your body than you know. Right now, trillions of microorganisms are hanging out in the gut (and elsewhere,) sustained in their own…

Continue Reading Why Disease is an Inside Job: Microbiome Researchers Crack the Code
What Does it Mean When We’ve Identified Batten Disease Biomarkers?

What Does it Mean When We’ve Identified Batten Disease Biomarkers?

  • Post author:Patient Worthy Contributor
  • Post published:August 31, 2017
  • Post category:Batten Disease/Rare Disease

Batten disease, also known as neuronal ceroid lipofuscinoses (NCLs) is a fatal, inherited disorder of the nervous system. It involves a build up of lipopigments that accumulate and kill brain…

Continue Reading What Does it Mean When We’ve Identified Batten Disease Biomarkers?

Featured


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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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