AstraZeneca, a global leader in pharmaceuticals, has taken a significant step into the rare disease arena in South Africa, aiming to improve diagnosis, treatment, and support for patients facing these…
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…
Patient Worthy is delighted to announce that the National Society of Genetic Counselors (NSGC) has joined us as an advocacy partner! Genetic counselors play a critical role for individuals, families,…
Grant Bonebrake was diagnosed with Alport syndrome at age 12. Since then, he has gone on to advocate for not only Alport syndrome patients, but the rare disease community as…
An Indian health policy initiative meant to provide funding to rare disease patients has struggled to gain approval from the country's administration, according to a publication from DNA India. First…
My first admission is that I actually know quite a bit about ABC's The Bachelor. Yes, that includes The Bachelorette too. I first started watching “ironically“ with my girlfriend, who…
In an article published by SciTech Europa, Professor Susanne Gerit Kircher with the Medical University of Vienna discusses some of the difficulties experienced by professionals on the front lines of rare…
Rare Disease patients tend to be tremendously aware of every aspect of our lives; our under-treated diseases, our lack of social support and our own coping mechanisms. We need more…
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