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Daily Archives: July 17, 2017

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Baby Elliot Faces Down FPIES and Food Allergies Every Day
Source: www.pixabay.com

Baby Elliot Faces Down FPIES and Food Allergies Every Day

  • Post author:Al Pendleton
  • Post published:July 17, 2017
  • Post category:Mast Cell Activation Syndrome/Rare Disease

Food allergies are nothing new. For two decades, the portion of children with a peanut allergy has essentially tripled. Eggs. Soy. Wheat. Fish. Onions... They’re all common food allergies. Besides…

Continue Reading Baby Elliot Faces Down FPIES and Food Allergies Every Day
Teenager Gets Millions of Views from His Tourette Syndrome Clip
[Source: pixabay.com]

Teenager Gets Millions of Views from His Tourette Syndrome Clip

  • Post author:Nia
  • Post published:July 17, 2017
  • Post category:Rare Disease/Tourette syndrome

According to the Daily Mail, 18-year-old Lewis Nickell from Northern Ireland has Tourette syndrome. The condition is characterized by a mixture of voluntary noises and movements referred to as tics.…

Continue Reading Teenager Gets Millions of Views from His Tourette Syndrome Clip
Rachael Ray Show Helps Dad with Stargardt Disease See Again
Source: www.pixabay.com

Rachael Ray Show Helps Dad with Stargardt Disease See Again

  • Post author:Al Pendleton
  • Post published:July 17, 2017
  • Post category:Rare Disease/Stargardt Disease

Whether it’s hiking the rainy hills of Kauai, sleeping over the water in Bora Bora bungalows, exploring inside Neuschwanstein Castle in Germany, or looking over the picturesque Matterhorn, there are…

Continue Reading Rachael Ray Show Helps Dad with Stargardt Disease See Again
ESPN Honors 15-Year-Old with Rare Liver Disease
Pixabay

ESPN Honors 15-Year-Old with Rare Liver Disease

  • Post author:Jean Martell
  • Post published:July 17, 2017
  • Post category:Biliary Atresia/Rare Disease

Leave it to a sports award show to recognize what a real fighter looks like. ESPN's annual award show (the ESPYs) honored 15 year-old Jarrius Robertson last week with the…

Continue Reading ESPN Honors 15-Year-Old with Rare Liver Disease
Multiple Sclerosis Questionnaire Could Predict Survival
Source: pixabay.com

Multiple Sclerosis Questionnaire Could Predict Survival

  • Post author:Athena Lee
  • Post published:July 17, 2017
  • Post category:Multiple Sclerosis/Rare Disease

Have you ever been handed a questionnaire at the doctor's office and wondered why and how it was relevant? Where does it go? Who has the time to read all…

Continue Reading Multiple Sclerosis Questionnaire Could Predict Survival
How a Grandfather’s Haircut Raised Over $4,000 for Cystinosis
Source: Pixabay

How a Grandfather’s Haircut Raised Over $4,000 for Cystinosis

  • Post author:Octavia Walker
  • Post published:July 17, 2017
  • Post category:Cystinosis/Rare Disease

One grandfather in the UK is took a nontraditional route to show his love and support for his granddaughter and her rare disease. Some people run 5Ks, some people go…

Continue Reading How a Grandfather’s Haircut Raised Over $4,000 for Cystinosis
Hunter Syndrome: When a Father’s Love Equals Action
[Source: pixabay.com]

Hunter Syndrome: When a Father’s Love Equals Action

  • Post author:Nia
  • Post published:July 17, 2017
  • Post category:MPS II (Hunter Syndrome)

Each year on the very last day of February, Jeff Leider makes a detour on his Hunter syndrome (mucopolysaccharide II) journey to travel from his home state of New Jersey to Washington…

Continue Reading Hunter Syndrome: When a Father’s Love Equals Action
Is 3-D Printing the Next Standard-of-Care for Craniofacial Patients?

Is 3-D Printing the Next Standard-of-Care for Craniofacial Patients?

  • Post author:Sarah Lau
  • Post published:July 17, 2017
  • Post category:Craniosynostosis/Rare Disease

In the span of five years, 3-D printing has taken off. What was once a hopeful idea for the future is now a common amenity in universities, a toy for…

Continue Reading Is 3-D Printing the Next Standard-of-Care for Craniofacial Patients?
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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