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Thrive Rare: Embracing the Uniqueness Within
Photo courtesy of Becky Tilley

Thrive Rare: Embracing the Uniqueness Within

  • Post author:Becky Tilley
  • Post published:May 2, 2023
  • Post category:Koolen-de Vries

Dear fellow rare community, It is with great joy that I share my journey of self-discovery and self-love with you. It took me a while to fully embrace my uniqueness…

Continue Reading Thrive Rare: Embracing the Uniqueness Within
What Causes of Alzheimer’s? Time for a New Direction

What Causes of Alzheimer’s? Time for a New Direction

  • Post author:Rose Duesterwald
  • Post published:June 10, 2022
  • Post category:Alzheimer's disease

The Irish Times recently featured a book by Dr. Karl Herrup about “How Not to Study a Disease." Dr. Herrup is clear that he opposes the theory that the amyloid…

Continue Reading What Causes of Alzheimer’s? Time for a New Direction
Adam Settle on His Book and How to Live Life to Its Fullest With A Rare Disease

Adam Settle on His Book and How to Live Life to Its Fullest With A Rare Disease

  • Post author:Sunniva Bean
  • Post published:December 10, 2020
  • Post category:homocystinuria/Rare Disease

Adam Settle, is an artist, football lover, and the youngest of eight. He’s also the subject of the new book, No Day Wasted: The Adam Settle Story, by Susan F. Stallings.…

Continue Reading Adam Settle on His Book and How to Live Life to Its Fullest With A Rare Disease
Author Uses Funny Fiction to Fight Hemochromatosis
Source: www.pixabay.com

Author Uses Funny Fiction to Fight Hemochromatosis

  • Post author:Lyssé Morganette
  • Post published:October 10, 2017
  • Post category:Hemochromatosis (Iron Overload Disorder)/Rare Disease

One author is using laughter to raise awareness about Hemochromatosis, or Iron Overload Disorder. It’s in the form of a book titled, “The Unexpected Consequences of Iron Overload: A Paranormal,…

Continue Reading Author Uses Funny Fiction to Fight Hemochromatosis
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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