Written by Carter Hemion On April 17, 2023, Governor Inslee signed a ceremonial proclamation recognizing May as Ehlers-Danlos Syndromes and Hypermobility Spectrum Disorder Awareness month in Washington State. The International…
Written by Salem Taylor My name is Salem, I’m 43 years old, live in North Carolina and have hyperkalemic periodic paralysis. Growing up as a tall, awkward home-schooled kid was…
Written by Peter de Silva As a young person, I tripped and fell on a regular basis. Including during one little league baseball game which we might have won -…
Written by Everett Alms Before I turned 15 years old, my parents had already taken me to see the Grand Canyon, NASA’s Kennedy Space Center, Disney World, Universal Studios, and…
Written by Jenny, Life's a Polyp I come from a long family line of individuals with familial adenomatous polyposis (FAP). My family though would learn the most about FAP because…
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…
Contributed by Critical Path Institute (C-Path) and republished by Patient Worthy - find the original source article here. C-Path’s CDRC is positioned to inform future clinical trials for diseases of…
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…
Contributed by Jane Larkindale and Alayna Tress While millions of people globally are living with a rare disease, patients often find it difficult to feel seen or heard throughout their…
Written by Libby Wilson, living with metastatic breast cancer Once there was a girl who met a boy. The girl chased the boy until he agreed to be her boyfriend.…
Contributed by Anna Ellis Every February 28, millions of people around the world participate in Rare Disease Day to raise awareness about the more than 10,000 identified rare diseases that affect…
Hello, I'm Ailbhe and along with Adam, my husband, and Sam (5) and Dara (3), we are the O'Reilly family from Dublin, Ireland. Dara has Glut1 deficiency syndrome and was…
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: Kala McWain There is no amount of time that can fully prepare you for the hard work and sacrifices it takes to be a good parent. These challenges…
What if this Christmas season, God would appear to me and say, “Ask what I shall give thee,” as He did in a dream to King Solomon many years ago.…
In May 2016, I was diagnosed with a rare genetic neurological disease called adrenoleukodystrophy (ALD). Sadly, it's incurable and there's no medication to ease my condition. Since then, my life…
To read part 1 of Nikole's Holiday Confession, click here. I feel guilty when my limitations force others to have to alter their holiday expectations. Like, how do I tell…
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…
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…
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