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Daily Archives: July 18, 2017

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Fun in the Sun? How One Little Girl Beat the Summer Heat after an EPP Diagnosis
Source: www.pixabay.com

Fun in the Sun? How One Little Girl Beat the Summer Heat after an EPP Diagnosis

  • Post author:Octavia Walker
  • Post published:July 18, 2017
  • Post category:hepatic porphyria/Rare Disease

The American Porphyria Foundation has a section on its website dedicated to telling patient stories. It gives voice to people's experiences and allows them to connect with others and share…

Continue Reading Fun in the Sun? How One Little Girl Beat the Summer Heat after an EPP Diagnosis
First Baby with Gastroschisis to Receive Lipid Treatment Inspires Hope
Source: www.pixabay.com

First Baby with Gastroschisis to Receive Lipid Treatment Inspires Hope

  • Post author:Al Pendleton
  • Post published:July 18, 2017
  • Post category:Gastroschisis/Rare Disease

Sometimes I muse considering the first person to pioneer certain things. For example, who looked at mushrooms growing out of a decaying log and thought: “Yum”? Or how about the person…

Continue Reading First Baby with Gastroschisis to Receive Lipid Treatment Inspires Hope
Meet a Mom on a Mission to Help Sickle Cell Anemia Families
[Source: pixabay.com]

Meet a Mom on a Mission to Help Sickle Cell Anemia Families

  • Post author:Ronald Ledsen
  • Post published:July 18, 2017
  • Post category:Rare Disease/Sickle cell anemia

I think it’s safe to say most people probably dream of making the world a better place in some way. Many of us are able to do just that by…

Continue Reading Meet a Mom on a Mission to Help Sickle Cell Anemia Families
College Runner Doesn’t Let Ulcerative Colitis Slow Him Down
[Source: pixabay.com]

College Runner Doesn’t Let Ulcerative Colitis Slow Him Down

  • Post author:Al Pendleton
  • Post published:July 18, 2017
  • Post category:ulcerative Colitis

We all remember that old adage that sports are 90% mental and only 10% physical. I remember thinking that every time I got done with baseball or soccer practice completely…

Continue Reading College Runner Doesn’t Let Ulcerative Colitis Slow Him Down
The FDA Has Some Exciting News for Hemophilia B Patients
[Source: pixabay.com]

The FDA Has Some Exciting News for Hemophilia B Patients

  • Post author:Minden Cantrell
  • Post published:July 18, 2017
  • Post category:Hemophilia B

We take most of our daily activities for granted. From working out at the gym to having our teeth cleaned, but for people living with hemophilia B what most people…

Continue Reading The FDA Has Some Exciting News for Hemophilia B Patients
Boy With Spinal Muscular Atrophy (SMA) Finds Hope with Spinraza®
Source: pixabay.com

Boy With Spinal Muscular Atrophy (SMA) Finds Hope with Spinraza®

  • Post author:Erica Zahn
  • Post published:July 18, 2017
  • Post category:Rare Disease/Spinal Muscular Atrophy

All Camden Fuller’s parents want is for him to have the chance to be healthy, grow up, and live a fulfilling life. That’s what every parent wants for their child.…

Continue Reading Boy With Spinal Muscular Atrophy (SMA) Finds Hope with Spinraza®
Community Comes Together to Help Paralyzed Girl Get Therapy Bike
Source: www.pixabay.com

Community Comes Together to Help Paralyzed Girl Get Therapy Bike

  • Post author:Al Pendleton
  • Post published:July 18, 2017
  • Post category:Rare Disease/Transverse myelitis

Fifteen is such an awkward age. Your body is growing; you might not have gotten past the clumsy, gawky, gangly stage yet. You’ve started to look at the opposite gender…

Continue Reading Community Comes Together to Help Paralyzed Girl Get Therapy Bike
Stargardt Disease: “I Once Was Blind, But Now I See” with Electronic Glasses
[Source: pixabay.com]

Stargardt Disease: “I Once Was Blind, But Now I See” with Electronic Glasses

  • Post author:Al Pendleton
  • Post published:July 18, 2017
  • Post category:Rare Disease/Stargardt Disease

Alfred, Lord Tennyson wrote, “’Tis better to have loved and lost than never to have loved at all.” This may be true for love. If you have loved before, you…

Continue Reading Stargardt Disease: “I Once Was Blind, But Now I See” with Electronic Glasses
Which Comes First? Researchers Explore the Skin Cancer-Parkinson’s Connection
Source: www.pixabay.com

Which Comes First? Researchers Explore the Skin Cancer-Parkinson’s Connection

  • Post author:Minden Cantrell
  • Post published:July 18, 2017
  • Post category:Parkinson's Disease/Rare Disease

Listen up, sun worshipers, there's yet another reason to slather on SPF 105. Researchers are now exploring the link between melanoma and Parkinson's Disease (PD). The root cause is not…

Continue Reading Which Comes First? Researchers Explore the Skin Cancer-Parkinson’s Connection
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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