For as long as she can remember, Nancy Yu has been entranced by the intersection of science and technology. In fact, as she describes it, she imagines a world in…
For Part 2 of "Save Our Medicine," we continue talking with Tiffany, DeAnna, and Sara about their families' NPC journeys, as well as the push for medication access. If you…
To learn more about Rachael's story, Niemann-Pick type C (NPC) symptoms, the diagnostic process, and how her mother Debbie found and offered support to other families, take a look at Parts…
The TSC Alliance® first began as a grassroots organization, founded by motivated mothers whose children had been diagnosed with tuberous sclerosis complex (TSC), a rare genetic disease. Since its founding,…
Author Lauren Wellbank recently interviewed Dr. Sara Candler, Director of the Iora Care Team, for a special edition of Martha Stewart’s Health and Wellness. The interview focused on dementia and…
Endometrial cancer is the most common form of cancer that develops in the uterus, and there is currently a need for more treatment options, especially when it comes to the…
OncLive recently interviewed Daniel Pollyea, MD, MS, about the current treatment landscape for higher-risk myelodysplastic syndromes (HR-MDS), along with exciting new data from a Phase 2 trial of pevonedistat plus…
When I sat down with 38-year-old Adam Kemble for our interview, there was one point that he really drove home: “You have the opportunity to choose what you let define…
MSN News recently interviewed Dr. Laxmikant Palo, with the conversation focusing on the situations of people living with rare diseases in India and how to improve them. According to Dr.…
Because I will be looking for a job from a rare but certainly not unique place of being, I decided to reach out to a mentor who lives with the…
I recently had the pleasure of being interviewed by Sunshine Mugrabi about how I transformed my life over the past 20 years in the face of immense pain and suffering…
Wisconsin; the land of beer, cheese, good-hearted people, and Maria Voermans - rare cancer survivor and now fierce advocate for the rare disease community. Ten years ago, Maria had the…
Read the first part of Lisa's story here. Lisa’s two direct and indirect bypass surgeries were successful. She now had seven times more blood flow to her brain than she…
At age twenty one, Lisa was about to graduate college and had a promising future career in front of her. All that was left was graduation itself. The week before…
Many persons living with rare disease require a transplant of certain organs. Though this is not a cure for the rare disease Cystinosis, a kidney transplant is often required once the disease…
Meet Andrea Wilson Woods (pictured below with her little sister); an author, public speaker, career coach, organization founder, and patient advocate. In her early twenties, Andrea became the legal guardian…
This is a continuation of An Interview with the Unstoppable Helena Baker. We had just learned about the multiple decades it took for her to receive her diagnosis of Fibula…
Helena Baker is the Vice President of Clinical Strategy at Medical Research Network, a Nurse, and also, a rare disease patient. I had the opportunity to interview her for a…
Many people are familiar with Carl Zimmer as a science columnist from The New York Times. His columns and research dug deeply into the field of genetic research and gene…
Patient Worthy™ had the unique opportunity to talk to the Coordination of Rare Diseases at Sanford, or CoRDS. Check out the interview below. 1) Can you tell us a little about…
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…
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…
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