So you just found out that you’re a rare disease girl, and by the way, you’re a rare mom too! So welcome to the smallest and hardest sorority to ever…
When I heard about the “Time for Lyme” Gala event that was held in early April 2016, I was tickled pink. These two daring Connecticut Moms, Rachel Robards and Marissa…
above image by Sandro Georgi Photography In honor of Mother's Day, Patient Worthy is featuring some of the Rare Moms in the community, those caring for children with a rare disease…
Hello my name is Ryan Szanto. I am 78 years old and have been an MDS (Myelodysplastic syndrome, blood cancer) patient for 19 years. I would like to convey to you…
It’s Lyme Disease Awareness Month which mean we get some well deserved time in the spotlight. As I reflect on what Lyme disease has taught me, it has been so…
With a disease as rare as cystinosis—as in, only 2,000 people around the world are believed to have it rare—one of the biggest hurdles to raising funds for research has…
We introduced Patient Worthy's newest and first Contributor living with Cushing's Disease in, On a Mission to be Fit and Fabulous, Meet Liz. If you are new to Liz's series about…
Myasthenia Gravis (MG) can make it hard for its sufferers to function normally whatsoever, as is the case for Cathy Liner, a woman living in Salem, North Carolina. Cathy has dedicated her life to…
His name is David Fajgenbaum. Although he is now a medical professor, his own journey with health and wellness has been a tumultuous one. His story starts with his time…
Rob is a pretty incredible guy. He is a grade A techie and he is a family man. Rob is living with Acromegaly, a rare disease which is caused by a very…
We introduced Patient Worthy's newest and first Contributor living with Cushing's Disease in, On a Mission to be Fit and Fabulous, Meet Liz. This is Part 2 of Liz's official interview. Part…
We introduced Patient Worthy's newest and first Contributor living with Cushing's Disease in, On a Mission to be Fit and Fabulous, Meet Liz. This is Part 1 of Liz's official interview. Part…
Fundraising isn’t easy. Like, it’s beyond not easy. But when the cause is right, you’ve just got to try. And the Reardons certainly have a good cause. When their son…
Heather Smith, who is the President and Co-Founder of SCID Angels for Life Foundation, is one tough cookie. Smith has dedicated her life to helping other parents as a result…
Listen up, people! This is important—especially if you’re an expectant mother! This article featuring a video in Rare Disease Report, is about an incredible mom named Amanda Miller and her son, Evan. Evan…
We all know the saying: April showers bring May flowers. But did you know that April sharing brings May caring? May is Vasculitis Awareness Month, and the Vasculitis Foundation has…
I love stories where people get what’s coming to ‘em! No, I don’t mean bad-guys comeuppance stories (although I DO enjoy an occasional one). I’m talking stories of deserving individuals…
above photo by Sandro Georgi Photography Kristina was symptomatic when she was around 12 or 13 but she wasn’t diagnosed with narcolepsy until over a decade later at 24. She thinks…
When she was two years old, Terry was diagnosed with tyrosinemia, a rare metabolic disorder makes the body unable to break down the amino acid tyrosine. Tyrosine is an important building block of…
Although I’m no “spring chicken,” I still grapple daily with the reality that innocent babies get sick and die, or that they don't die, but they languish and suffer; it’s…
...But you didn’t order fries and you certainly don’t want the combo meal! I recently read about Kelly du Plessis, a Mom in South Africa whose 6 year old son…
Kudos and congratulations to TV station, KCRA 3 for heading up a special blood drive! They put the spotlight on J.J. and Carson Huish, twin boys who have Severe Combined…
Liz is living with Cushing's Disease and is on a mission to be happy and well Patient Worthy is so excited to welcome Miss Liz Calabro to our family of incredible…
Photography by Sandro Georgi Photography Nolan is an incredible person and father who is living with dystonia. He hasn't let the movement disorder hold him back from anything, even running a…
HEY KIDS! Are you tired of people not knowing about primary immunodeficiency? Take these 3 steps to teach others what PI means to you: First, THINK ZEBRA! What does that…
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