Acknowledgement: This article was originally written by Gillian Sapia, a mother of a child living with galactosemia, for Underground Rare Road. To see the original article, please click here. When…
I often find myself initially stuck on where to start when telling our story. I say “our” because that’s the truth of this rare disease journey: everyone who touches Natalie’s…
Patient Worthy is grateful to our partner Elephants & Tea for providing the following article by Laura DeKraker Lang-Ree, a cancer caregiver to her daughter Cecilia who survived childhood leukemia.…
Mama we are all different colors and we are all beautiful. For our final Throwback Thursday we bring to you the story of Mariana, a young girl diagnosed with Pfeiffer…
Editor’s Note: This is the third and final part of a caregiver story-share. To read part one, click here. For part two, click here. These moments of light, these tiny…
Editor’s Note: This is the second part of an ongoing story. The third and final part will be published Tuesday, June 25th. To read part one, click here. The initial…
Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of Patient Worthy. At just 5…
Editor's Note: This is the first part of an ongoing story. The second part will be published Tuesday, June 17th. The fluorescent lights of the hospital room hummed, a stark…
Three hundred and ten: The number of days we had prior to our lives forever changing. On April 13, 2022, it was a day like any other. My husband and…
My name is Elena, mother to Jaicion. In 2021, I was pregnant with Jaicion, and the doctors ran tests that they would run on any mother-to-be. My doctor called me…
Patient Worthy is grateful to present this article by way of the CureGRIN Foundation. CureGRIN is a foundation founded and run by parents who are committed to improving the lives of people…
At first, Dr. Rebecca Elon began to notice her husband’s personality changes and an occasional lapse in judgment. These incidents occurred in 2013. Although Dr. Elon’s husband, William Adler III…
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