Pumpkin pie, ginger-bread cookies, candy canes, and chocolates. Oh what a sweet season! A few nights ago my kids and I spent a few hours crouched over the wafting smells…
Written by Lisa Ann Krutzik An inexpensive and extremely valuable gift you can give your older teen or adult child this holiday season... A letter from you. I spend a…
“I spent the majority of my life fearing the weight of VHL will eventually crush me, but thanks to this drug trial, not only do the rest of my fellow…
Real World Evidence Note: This story was originally published by our partner organization TREND Community. You can check out the original publication here. When I was nine years old, I…
Because it is Thanksgiving, the Patient Worthy team asked me to share my thoughts on gratitude. Some among us might think it would be a daunting assignment. After all, I have a…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
This story was originally published by the Family Heart Foundation, a Patient Worthy partner organization. When Jessica’s father died of a heart attack at the young age of 54, she…
Chances are, you’ll never meet anyone like Lizanne, a 22-year-old woman from the Netherlands. Not only is she extraordinarily passionate about storytelling and filmmaking, but she was diagnosed with a…
Families caring for medically complex children face almost unfathomable decisions, often with no prior experience to guide their thinking and acting. Second only to the clinician expertise on which…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Written by Dennis Lodge Inclusion in the workplace is a big thing for virtually every major corporation in the world, however, the World Economic Forum statistics say that merely 4…
Written by Christina Fleagle There are millions of people around the world living with a rare disease, and for many, you may not know it by looking at them. But…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Want to learn about scientific topics without needing a PhD? Check out the Science Simplified blog from TESS Research Foundation! Dr. Tanya Brown, PhD, works with researchers to make science…
Written by Muriël Marks, Executive Director, World Alliance of Pituitary Organizations History Between 2012-2014, Novartis started to send out personal invitations to acromegaly and Cushing’s patient advocates to represent their…
Written By Ashely Winslow, PhD, President & Chief Scientific Officer of Odylia Therapeutics One of the biggest issues impacting many rare disease communities is the availability of approved treatments. While…
Written by Molly D'Angelo I’m like most parents in that I never want to see my children hurting physically or emotionally. We would do anything to prevent their pain—put a…
Written by Derek Zinser, Author Bravery Books and the story of Sir Roland's BIG Adventure came about from the loss of my father to cancer on New Year's Day in…
Written by: Tyler Bradley, PFIC Network The PFIC Scientific Conference Held Many Great Presentations and Roundtables That Informed Both The Scientific And Patient Communities. Last month the PFIC Network hosted…
Continued From Part One He cannot participate in the sports and physically demanding hobbies he once enjoyed. “Due to pool & gym closures during the Covid pandemic, walking was my…
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