Pearl Jam front-man Eddie Vedder takes center stage in the new documentary “Matter of Time,” offering fans and viewers a rare, intimate glimpse into his life as both an artist…
The FDA is taking significant steps to update and streamline its regulatory approach to rare diseases, according to a recent article from BioCentury.com. Recognizing the unique challenges faced by patients,…
Living with a rare or chronic illness is a journey marked by uncertainty, resilience, and the power of community. For the last 10 years at Patient Worthy, individuals from all…
Alnylam Pharmaceuticals has launched a unique promotional campaign for Givlaari, its treatment for acute hepatic porphyria (AHP), that swaps the usual clinical narratives for something more artistic: dance. As reported…
In a significant stride for global health, the United Nations recently adopted a historic resolution dedicated to rare diseases. This move, as reported by Medics 4 Rare Diseases, celebrated by…
Many people with rare diseases struggle to access personalized therapies simply because they lack a confirmed genetic diagnosis. This barrier blocks access to targeted treatments and clinical trials, leaving families…
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…
In the realm of rare diseases, effective communication can be a formidable challenge, especially when symptoms impact speech and expression. Remembering our very first post on May 19, 2015, Patient…
In the remote town of Serrinha dos Pintos in northeastern Brazil, a rare genetic disorder once shrouded in mystery has shaped the lives of many families for generations. As reported…
Since its inception in 2015, PatientWorthy.com has emerged as a beacon of hope, information, and support for the global rare disease community. From humble beginnings with its very first post,…
We all know that changing habits of behavior changes our life experiences, but putting this to practice is where a lot of us get stuck. Either we doubt our ability,…
In 2023, Marley Mansour of Rowlett, Texas and her family were told that Marley had an extremely rare genetic condition called NARS1 disorder. Now, Marley is the world’s first person…
Professor Ronald Breslow was a chemist at Columbia University who, in 1958, proposed the theory that vitamin B1 (thiamine) could regulate metabolism pathways in the body by stabilizing a reactive…
Let’s start at the beginning of my long journey. My name is Laura, and around fifteen years ago, I was diagnosed with type-2 diabetes and prescribed medication to control it.…
This isn’t a cute extra. It’s essential… Let’s stop calling it fluff and start calling it what it is: trauma-informed care in action. Medical play isn’t just a feel-good initiative…
In 1999, Towana Looney, a resident of Alabama, donated one of her own kidneys to help save her mother’s life. Then Towana waited eight years for an organ transplant that…
A recent study by Texas A&M researchers evaluated the results to male offspring of parental alcohol exposure. The exposure to the chemical diethylnitrosamine was found to be disruptive to mitochondrial,…
Patient Worthy is so grateful to our partners IPPF-The International Pemphigus & Pemphigoid Foundation and for the change to share Halima's story. IPPF's mission is to improve the quality of…
Due to the efforts of public health officials in the 1940s, Murine typhus was almost eradicated in the United States. However, there now appears to be a resurgence in the…
For Bubba 7/31/1997 - 7/22/2018 How do you love a child you know will die young? You love recklessly, with abandon. You don’t mean to - but you can’t stop…
Professor Sophia Padilla, lead author of a new study on antibiotic resistance describes the cycle in an article published in UC Irvine’s American Chemical Society Journal. Scientists develop drugs to…
One Million People: That is an estimate of the number of individuals who die from infections that resist drugs such as antibiotics according to a report in BBC News. Yet,…
Patient Worthy is honored to be able to share Zoe Ridgeway's story by way of theBHDFoundation.org. Zoe's story was shared for Rare Disease Day 2025 and the BHD Foundation believes…
Editor's Note: Patient Worthy is grateful to present this article that was written by and shared with permission from Sue Skavlem, a care partner to her husband who is living with…
Sixty-six-year-old Tim Andrews, a resident of New Hampshire, is the fourth patient worldwide to undergo a pig kidney transplantation. As reported recently in a Mass General News Release, Tim is…
Sign Up With a Patient Worthy Account and Share Your Rare Story
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
- OR -
Make a difference, share your experiences and get paid. Opt-in and join Patient Worthy's panel for paid opportunities such as surveys, market research, patient advisory panels and more.
