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Watch: 6-Year-Old Has Disease So Rare, Doctors Named it After Him

Watch: 6-Year-Old Has Disease So Rare, Doctors Named it After Him

  • Post author:Jean Martell
  • Post published:July 18, 2019
  • Post category:Rare Disease

Meet 6-year-old Grayson Kole Smith -- who after 36 surgeries and a grim prognosis has overcome the odds to live his life. Grayson was born with several serious medical issues…

Continue Reading Watch: 6-Year-Old Has Disease So Rare, Doctors Named it After Him
Community Builds Boy with Rare Disease a “Man Cave” to Recover from Surgeries

Community Builds Boy with Rare Disease a “Man Cave” to Recover from Surgeries

  • Post author:Jean Martell
  • Post published:July 12, 2019
  • Post category:Caudal regression syndrome

This is a great story about people coming together for a young boy with a rare disease, reported by a local tv news affiliate. Members of the Rhode Island State…

Continue Reading Community Builds Boy with Rare Disease a “Man Cave” to Recover from Surgeries
Oklahoma Community Rallies Behind Toddler Battling Rare Disease AFM

Oklahoma Community Rallies Behind Toddler Battling Rare Disease AFM

  • Post author:Jean Martell
  • Post published:April 18, 2019
  • Post category:Acute flaccid myelitis/Rare Disease

Six weeks ago, Gretchen and Josh of Oklahoma rushed their precious 5-month-old Opal to the hospital after she became extremely sick from a cold. It didn't take doctors too long…

Continue Reading Oklahoma Community Rallies Behind Toddler Battling Rare Disease AFM
Gastroschisis Awareness Day: What You Need to Know and How to Help!
PixLoger / Pixabay

Gastroschisis Awareness Day: What You Need to Know and How to Help!

  • Post author:Jean Martell
  • Post published:July 20, 2018
  • Post category:Gastroschisis/Rare Disease

July 30th is Gastroschisis Awareness Day! Gastroschisis is a rare birth defect of the abdominal wall.  With this condition, the baby’s intestines stick outside of the body through a hole in…

Continue Reading Gastroschisis Awareness Day: What You Need to Know and How to Help!
You Are Not Alone: Empowering the Advanced Kidney Cancer Community
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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