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Daily Archives: February 14, 2018

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Boy Visits His Parents In Syria After Treatment in the United States
Source: Pixabay

Boy Visits His Parents In Syria After Treatment in the United States

  • Post author:Meagan Fulps
  • Post published:February 14, 2018
  • Post category:Juvenile idiopathic arthritis

The Alsabaa family not only has to deal with their 6-year-old son ,Tony, fighting children's idiopathic arthritis, but they are also not allowed to be in the States with him…

Continue Reading Boy Visits His Parents In Syria After Treatment in the United States
Bus Loving Four-Year-Old with Prader-Willi Syndrome Dies Unexpectedly
source: pixabay.com

Bus Loving Four-Year-Old with Prader-Willi Syndrome Dies Unexpectedly

  • Post author:James Moore
  • Post published:February 14, 2018
  • Post category:Prader-Willi Syndrome

According to a story from CTV Vancouver Island News, a charming young child known affectionately as 'bus boy' died in his sleep on Saturday, January 27th. Dominic Orr was only…

Continue Reading Bus Loving Four-Year-Old with Prader-Willi Syndrome Dies Unexpectedly
Rare Disease Survivor Gets NFL Combine Invite
Source: Pixabay.com

Rare Disease Survivor Gets NFL Combine Invite

  • Post author:Meagan Fulps
  • Post published:February 14, 2018
  • Post category:Amniotic Band Syndrome

Shaquem Griffin, a linebacker from the University of Central Florida receives a ton of buzz because he's an amazing athlete. Point blank. As he should. Originally reported by Rare Disease…

Continue Reading Rare Disease Survivor Gets NFL Combine Invite
Hereditary Hemochromatosis Explained by a Doctor
Source: www.pixabay.com

Hereditary Hemochromatosis Explained by a Doctor

  • Post author:Lyssé Morganette
  • Post published:February 14, 2018
  • Post category:Hemochromatosis (Iron Overload Disorder)

In an article posted by the Wyoming Medical Center, Dr. Adam Linck clears up some common questions concerning hereditary hemochromatosis. People living with this condition have an excess amount of…

Continue Reading Hereditary Hemochromatosis Explained by a Doctor
Wear Socks on Your Hands to Help Little Girl with EB To Receive Bone Marrow Transplant
Source: Pixabay

Wear Socks on Your Hands to Help Little Girl with EB To Receive Bone Marrow Transplant

  • Post author:Meagan Fulps
  • Post published:February 14, 2018
  • Post category:Epidermolysis Bullosa

While she's constantly smiling and full of energy, little girl Makenzie Cadmus struggles with a rare condition known as epidermolysis bullosa, reports News 12 Long Island. The rare disease has…

Continue Reading Wear Socks on Your Hands to Help Little Girl with EB To Receive Bone Marrow Transplant
Crowd-Source Funding Helps Man with Hepatic Porphyria Finally Receive a Diagnosis and Treatment
iAmMrRob / Pixabay

Crowd-Source Funding Helps Man with Hepatic Porphyria Finally Receive a Diagnosis and Treatment

  • Post author:Minden Cantrell
  • Post published:February 14, 2018
  • Post category:hepatic porphyria

For people who don't live with chronic painful conditions, such as hepatic porphyria, it's hard to imagine the type of intense pain Colin McEwen was in -- both physically and…

Continue Reading Crowd-Source Funding Helps Man with Hepatic Porphyria Finally Receive a Diagnosis and Treatment
One Million Dollar Payday to be Rewarded for IPF Innovation
Source: www.pixabay.com

One Million Dollar Payday to be Rewarded for IPF Innovation

  • Post author:Minden Cantrell
  • Post published:February 14, 2018
  • Post category:Idiopathic Pulmonary Fibrosis

A wealthy do-gooder is championing Idiopathic Pulmonary Fibrosis (IPF). No, it's not Tony Stark (a.k.a. Ironman). But there is a mega-force super power uniting global innovators, researchers, and healthcare entrepreneurs…

Continue Reading One Million Dollar Payday to be Rewarded for IPF Innovation
Widowed Man Honors Wife Last Wish With Surrogate
[Source: pixabay.com]

Widowed Man Honors Wife Last Wish With Surrogate

  • Post author:Meagan Fulps
  • Post published:February 14, 2018
  • Post category:Thyroid Cancer

Just recently reported by BBC News, Jake Coates made a hard decision to stop attempting to have a child through the surrogate route after two failed attempts. Not even two…

Continue Reading Widowed Man Honors Wife Last Wish With Surrogate
9-Year-Old Girl Receives White House Prayers Prior to Brain Surgery
Source: Pixabay

9-Year-Old Girl Receives White House Prayers Prior to Brain Surgery

  • Post author:Meagan Fulps
  • Post published:February 14, 2018
  • Post category:Rare Disease

Sophia Campa-Peters, a little 9-year-old suffering from a rare disease that resulted in several strokes, had a successful brain surgery just a few weeks ago, as reported Lubbock Online. The…

Continue Reading 9-Year-Old Girl Receives White House Prayers Prior to Brain Surgery

Featured


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Metastatic Breast Cancer: Navigating Grief


Picture of Ralph Family walking


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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