My name is Gretchen Burnett, & I survived a rare spinal bone infection called Salmonella osteomyelitis. Less than 2% of people with spinal involvement survive it. It nearly took my…
As far as I can remember, I have always had an intolerance of heat and cold. I can remember at a young age not wanting to go outside in the…
For most of my life — starting when I was eight years old — I lived with a deep burning pain in my hands that felt like holding hot coals.…
When ovarian cancer returns and becomes resistant to platinum-based treatments, patients face one of oncology's most difficult scenarios. As reported by Drugs.com, a new therapeutic approach is changing this reality.…
My story began before I was old enough to understand it. Childhood cancer shaped my body and my life long before I had words for fear, pain, or survival. That…
CAR-NKT cell therapy (NKT) is capable of precision targeting when equipped with CAR. The UCLA study’s co-senior author, Dr. Lili Yang stated that personalized immunotherapies in use today may cost…
Cabaletta Bio has announced significant progress in its development of chimeric autoantibody receptor T cell (CAAR-T) therapies, marking a major milestone with the initiation of its first pivotal myositis trial…
After being diagnosed with a rare disease or any other chronic health condition (in my case I have dystonia) and learning it is not a temporary problem (or if you…
Editor's Note: Patient Worthy is proud to share part 10 of 10 of Elena Genik's blog, detailing her journey with Graves disease and thyroid eye disease. Healing Is More Than…
Rare Disease Month is deeply personal to our family. Before Pruitt, our youngest son, we had never heard of Ornithine Transcarbamylase (OTC) Deficiency, nor did we truly understand how fragile…
Ever since Celine Dion, the popular superstar, announced the cancellation of her 2023 tour due to a diagnosis of Stiff Person Syndrome, or SPS, the disease has been in the…
Elevar Therapeutics has achieved a significant regulatory milestone with the US Food and Drug Administration's acceptance of a resubmitted New Drug Application for rivoceranib in combination with camrelizumab as first-line…
Sharing My Stripes 🦓 This Rare Disease Month, I'm honored to share my journey living as someone with a rare disease and what Rare Disease Month means to me. This…
Editor's Note: Patient Worthy is honored to share part 9 of 10 of Elena Genik's blog documenting her experiences with Graves disease and thyroid eye disease. A Missing Piece in…
When patients and families face a life-or-death disease, bureaucracy often feels like the enemy. Yet in early February 2026, the FDA delivered something rare: a formal response letter that transcended…
Hi! My name is Tessa, and I have a rare disease called Acromegaly. My journey started in 2015 when we discovered I had a 9x10x12 tumor growing on my pituitary…
Editor's Note: Patient Worthy is pleased to share this article, submitted to us by George Simpson, who volunteers for the CMT Research Foundation. There are estimated to be between 6,000 and…
Primary biliary cholangitis (PBC) represents a chronic, progressive autoimmune liver disease characterized by the destruction of small bile ducts, leading to cholestasis and potentially fatal complications. Affecting millions globally with…
Editor's Note: The above photograph is credited to Patient Voice. “Ringing the bell” is an enduring image associated with cancer survivorship. It represents victory, celebration and the end of treatment.…
Editor’s Note: Patient Worthy is honored to share part 6 of 10 of Elena Genik’s series of blog posts detailing her journey with Graves disease and thyroid eye disease. The Turning Point There…
Otsuka has launched an ambitious awareness initiative designed to fundamentally shift how healthcare professionals understand and approach attention-deficit/hyperactivity disorder (ADHD). As reported by FiercePharma.com, the company's "All of ADHD" campaign…
When my son was eight months old, he had already been hospitalized more times than I can count for infections that seemed far too severe for a baby. Ear infections,…
It took two new cases of the deadly Nipah virus to remind people in West Bengal, India of the 1998 outbreak that killed over one hundred people. Nevertheless, according to…
Takeda Pharmaceutical has reached a significant milestone in the development of oveporexton (TAK-861), with the US Food and Drug Administration officially accepting and granting Priority Review status to the investigational…
As reported on MedicalXpress, the European Medicines Agency’s Committee for Medicinal Products for Human Use (CHMP) has issued a positive opinion for several therapies this cycle, including a conditional endorsement…
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