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Daily Archives: September 28, 2017

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Family Honors This Vietnam Veteran with Amyloidosis
Source: pixabay.com

Family Honors This Vietnam Veteran with Amyloidosis

  • Post author:Sabina Kennedy
  • Post published:September 28, 2017
  • Post category:Amyloidosis/Rare Disease

How often do you reflect upon all the genuine reasons to be grateful? What prompts you to shift your focus from the sense of self to others? Do you find…

Continue Reading Family Honors This Vietnam Veteran with Amyloidosis
UK Couple Battles Dual Brain Tumor Diagnoses
Source: Pixabay

UK Couple Battles Dual Brain Tumor Diagnoses

  • Post author:Andres Rovira
  • Post published:September 28, 2017
  • Post category:von Hippel-Lindau Syndrome

Dealing with a tragedy such as a brain tumor poses a great challenge to relationships. In this rare occurrence, a young couple from England were both diagnosed with a brain…

Continue Reading UK Couple Battles Dual Brain Tumor Diagnoses
This Cool Chick’s Technicolor Sock Collection Helps Young Cancer Patients
Source: Pixabay

This Cool Chick’s Technicolor Sock Collection Helps Young Cancer Patients

  • Post author:Andres Rovira
  • Post published:September 28, 2017
  • Post category:Neurofibromatosis

In Hartford Connecticut, 12-year-old Emma Becker has been fighting the brave fight against cancer for the last four years. Her condition: Neurofibromatosis, a condition that causes growths of tumors to…

Continue Reading This Cool Chick’s Technicolor Sock Collection Helps Young Cancer Patients
3 Tips You Need to Know if You are a Rare Disease Caregiver
[Source: pixabay.com]

3 Tips You Need to Know if You are a Rare Disease Caregiver

  • Post author:Octavia Walker
  • Post published:September 28, 2017
  • Post category:Waldenstrom Macroglobulinemia

According to a lovely post on the International Waldenstrom's Macroglobulinemia Foundation website, Julianne married the love of her life at the age of 19; her husband John was 30. In…

Continue Reading 3 Tips You Need to Know if You are a Rare Disease Caregiver
A New Hope for Rare Bone Disease
Source: Pixabay

A New Hope for Rare Bone Disease

  • Post author:Andres Rovira
  • Post published:September 28, 2017
  • Post category:Hereditary Multiple Osteochondromas/Rare Disease

It's called Hereditary multiple exostoses (HME). Yes, quite the mouthful. Our friendly neighborhood scientists at Children's Hospital of Philly (CHOP) have been working diligently to study this rare bone disease…

Continue Reading A New Hope for Rare Bone Disease
New Research in the Fight Against Neuroblastoma
Source: Pixabay

New Research in the Fight Against Neuroblastoma

  • Post author:Andres Rovira
  • Post published:September 28, 2017
  • Post category:Neuroblastoma

Neuroblastoma has been one of those rare diseases that affects the youth and nobody messes with our future generation! This form of cancer weasels its way and burrows deep in…

Continue Reading New Research in the Fight Against Neuroblastoma
Finding Light Through Story-The Power of Ambassadorship in the Endometrial Cancer Community
*cancer that cannot be removed with surgery or has spread to other parts of the body. GEJ= gastroesophageal junction (where the esophagus joins the stomach)
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