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Daily Archives: November 2, 2017

Home » Archives for November 2, 2017
I Am a Blessing-Part Two of My Cystinosis Series
Source: Pixabay

I Am a Blessing-Part Two of My Cystinosis Series

  • Post author:Rebekah Palmer
  • Post published:November 2, 2017
  • Post category:Cystinosis

I was in fourth grade at the K-12 parochial school in a small, northern town in Wisconsin. After Kindergarten, we all were divided into two to three grades per classroom.…

Continue Reading I Am a Blessing-Part Two of My Cystinosis Series
Photographer Sheds Light on Rare Diseases in Remarkable Project
Source: Pixabay

Photographer Sheds Light on Rare Diseases in Remarkable Project

  • Post author:Andres Rovira
  • Post published:November 2, 2017
  • Post category:Moebius Syndrome

Ceridwen Hughes is known for capturing visceral moments of reality in striking photography series. This time, she has navigated into the devastating world of rare disease and she's using her…

Continue Reading Photographer Sheds Light on Rare Diseases in Remarkable Project
Trick or Treating Brought to Girl with Rare Disease
Source: Pixabay

Trick or Treating Brought to Girl with Rare Disease

  • Post author:Andres Rovira
  • Post published:November 2, 2017
  • Post category:MPS III (Sanfilippo Syndrome)

On Tuesday night, children hit the streets for their Halloween candy quest. Because of her rare disease, Emily Sawyer, had to stay in. But that didn't stop the community from…

Continue Reading Trick or Treating Brought to Girl with Rare Disease
This Dad Rocks: How One Father Fights for Tuberous Sclerosis Patients
source: pixabay.com

This Dad Rocks: How One Father Fights for Tuberous Sclerosis Patients

  • Post author:Patient Worthy Contributor
  • Post published:November 2, 2017
  • Post category:Tuberous Sclerosis Complex

Elliott Cunnew, from Collaroy, Australia is what you might call a cool dad. Elliot is the father two kids, 20-year-old Amelia, and 17-year-old Lachie. During the day, he sells private…

Continue Reading This Dad Rocks: How One Father Fights for Tuberous Sclerosis Patients
Rare Cancer Patient with Short Life Expectancy Defies Odds
Source: Pixabay

Rare Cancer Patient with Short Life Expectancy Defies Odds

  • Post author:Andres Rovira
  • Post published:November 2, 2017
  • Post category:Neuroblastoma/Rare Disease

Sometimes patients receive the hard-hitting news of short life expectancies. What happens when a doctor tells you you won't make it to adulthood? What becomes your life priority? Sometimes, however,…

Continue Reading Rare Cancer Patient with Short Life Expectancy Defies Odds
Living With Rare Disease in Trump’s America
Source: Pixabay

Living With Rare Disease in Trump’s America

  • Post author:Andres Rovira
  • Post published:November 2, 2017
  • Post category:Moebius Syndrome/Rare Disease

A new book was just released called “Nasty Women: Feminism, Resistance, and Revolution in Trump’s America,” a collection of essay's written by empowered women speaking out against life in Trumpland.…

Continue Reading Living With Rare Disease in Trump’s America
Check Out This Competition for Rare Artists
source: pixabay.com

Check Out This Competition for Rare Artists

  • Post author:Patient Worthy Contributor
  • Post published:November 2, 2017
  • Post category:Rare Disease

Painters, photographers, sculptors, and visual artists that defy categorization, take note! The EveryLife Foundation for Rare Diseases' Rare Artist Contest is back, for the ninth year in a row. The…

Continue Reading Check Out This Competition for Rare Artists
Fast Facts about Hemochromatosis aka Iron Overload
kropekk_pl / Pixabay

Fast Facts about Hemochromatosis aka Iron Overload

  • Post author:Lyssé Morganette
  • Post published:November 2, 2017
  • Post category:Hemochromatosis (Iron Overload Disorder)/Rare Disease

Many individuals living with hemochromatosis can lead normal, healthy lives. Most people living with the condition have the same life expectancy than those without. However, it's important to know some fast…

Continue Reading Fast Facts about Hemochromatosis aka Iron Overload
Gluten-Free, Dairy-Free Sweet Potato Biscuit Recipe for a Rare Disease Thanksgiving
Source: Pixabay

Gluten-Free, Dairy-Free Sweet Potato Biscuit Recipe for a Rare Disease Thanksgiving

  • Post author:Patient Worthy Contributor
  • Post published:November 2, 2017
  • Post category:Rare Disease

I love Thanksgiving! It's a great time to catch up with friends and family. The one drawback is my diet is strictly controlled due to my rare disease, so at…

Continue Reading Gluten-Free, Dairy-Free Sweet Potato Biscuit Recipe for a Rare Disease Thanksgiving

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