August 2025 was a landmark month for rare disease innovation, as the U.S. Food and Drug Administration (FDA) granted four historic approvals, each representing a
Researchers at UC Berkeley, DTU, and OptoCeutics in Denmark have created a non-medical light-based technology that improved cognitive function for Alzheimer’s patients who have participated
HIV-associated facial lipodystrophy, a frequent complication of long-term antiretroviral therapy (ART), is characterized by abnormal fat distribution in the face and neck. This condition, often
The landscape of HIV treatment continues to evolve, and a significant milestone has just been reached with the FDA’s approval of Rukobia (fostemsavir), a novel
Acknowledgment: Patient Worthy is honored to share this story, provided to us by our friends at The AAMDS International Foundation. To see the article in
When you become a parent, your life changes in an instant. You’re no longer just living for yourself—you’re living for your child. A fierce and
A recent report from Yahoo News highlights the emergence of Guillain-Barré Syndrome (GBS), a rare but serious paralytic disorder, as a growing concern within the
Baylor Genetics is set to showcase groundbreaking innovations in RNA sequencing for rare disease diagnosis at the 2025 Advances in Genome Biology and Technology (AGBT)
In our second installment from our series of reports provided by our partner TREND Community, we are going to be focusing on a different condition
The U.S. Food and Drug Administration (FDA) is reviewing the first medication specifically developed for Barth syndrome, a rare and life-threatening genetic disorder. As reported
A recent report from NDTV World brings attention to a rare but significant public health event: an American man has tested positive for plague, the
Acknowledgement: Patient Worthy is proud to share this article from our friends at the Fatty Liver Foundation. As a patient, what I really want to
Health authorities in Queensland, Australia, have issued a public warning after the discovery of Naegleria fowleri—a rare but deadly “brain-eating” amoeba—in a town’s water supply.
Rocket Pharmaceuticals has received the green light from the US Food and Drug Administration (FDA) to resume its pivotal Phase II Danon disease gene therapy
Patient Worthy is excited to share our most recent episode of our podcast Wait, How Do You Spell That? featuring Lisa Batista. Lisa shares her story
ITF Therapeutics has announced the publication of encouraging long-term data supporting the efficacy and safety of givinostat as a treatment for Duchenne muscular dystrophy (DMD),
A recent study highlighted in Hematology Advisor explores the challenges of monitoring patients with hemophilia A after gene therapy, specifically focusing on the reliability of
I was diagnosed with Type-1 narcolepsy when I was 20 years old. At the time, I was living in Germany, dancing as a professional ballet
Patient Worthy is honored to share Leanna's story about life with NF2-Related Schwannomatosis. Read here:
patientworthy.com/2025/09/20/leannas-story-with-schwannomatosis/
Usher syndrome affects an estimated 3 to 6 out of every 100,000 people and is the leading cause of combined deafness and blindness. On this awareness day, we recognize this often overlooked condition and the strength of those living with it. #ushersyndromeawareness #raredisease #shareyourstory #PatientWorthy
If you're interested in sharing your story, click here: bit.ly/4dV7gru
Meet Jhonnatan @imjhonnyjhay - you can also call him Jhonny or Jhay. His recent journey with gastric cancer at age 36 ignited a passion within him to share his story and advocate for others. What began as a personal effort to keep his friends and family abroad informed has grown into a mission to build a community of support and awareness. Through Jhonnatan’s experience, he has learned the profound importance of self-advocacy and trusting your instincts, especially when navigating the healthcare system. Jhonnatan’s goal is to encourage others to take an active role in their health and become their own best champions. To share your story with gastric cancer click the link: bit.ly/4dV7gru. #whatnext #shareyourstory #gastriccancer #patientworthy #cancer
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