In October 2021, I was diagnosed with a rare, possibly life-threatening autoimmune disease called Myasthenia gravis. Some people said I had to “reinvent myself,” because
A recent article published in the Orphanet Journal of Rare Diseases highlights the launch and goals of RARE-Impact, a new European project designed to enhance
Sixty-five-year-old JoEllen Zembruski-Ruple had been a cancer patient at the revered Sloan Kettering center in January of this year. Her treatment for squamous cell carcinoma
For Part 1 of this series provided to you by TREND Communities, please click here. On July 10, 2024, TREND Community released an impactful new
In an inspiring act of love and advocacy, Joburg resident Nthabiseng Mokoena has completed a remarkable 35-day walk from Johannesburg to Cape Town to raise
Editor’s Note: This is the second part of an ongoing story. The third and final part will be published Tuesday, June 25th. To read part
Researchers have discovered a potential “window” whereby babies born with inherited diseases may be treated with gene therapy sent directly into their circulatory systems. The
Launched in May 2015, Patient Worthy set out with a bold mission: to amplify the voices of rare disease and chronic illness patients, and to
This Father’s Day, Patient Worthy honors the strength, resilience, and unwavering dedication of fathers of children with rare diseases. Their journeys inspire us all and
HepaRegeniX GmbH has announced the dosing of the first patient in its Phase Ib clinical trial of HRX-215, a novel small-molecule inhibitor designed to promote
A recent study has revealed that vitamin B3 could offer hope for patients suffering from a rare genetic disorder that causes accelerated aging. As reported
In 2019 I presented with dark purple spots on my legs, and my neurologist decided to do lab work. My labs showed a high IGM
Disclaimer: The views and opinions expressed in this article are those of the author and do not necessarily reflect the official policy or position of
A dedicated Hull resident, Jonny Wightman, is preparing to cycle an impressive 100 miles to raise awareness and funds for rare diseases. As reported by
The FDA recently informed Muscular Dystrophy News that it has granted orphan drug designation to the experimental drug ISX9-CPC, a product of the IPS Heart
My symptoms began in 2001 and within 6 months I went from functionally uncomfortable to disabled to the point that I could barely lift myself
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
In 2014 the U.S. experienced a nationwide outbreak of EV-D68, raising concerns about children’s respiratory health. Acute flaccid myelitis disease (AFM) also spiked. EV-D68 is
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