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If you had asked me a few years ago what I thought my biggest health concern would be, lung cancer wouldn’t have even crossed my
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Hereditary ATTR Amyloidosis
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Reflections on V122I, Genetic Risk, and the Questions Black Families Are Still Asking Editor’s Note: This article was written and submitted to us by Erin
Rare Disease
Treating Inflammation vs. Bacteria
According to recent reports, assistant pediatric professor at the Boston Children’s Hospital, Prof. Meenakshi Rao, noted that infections associated with Clostridioides difficile (C. Diff.) are difficult to eradicate. Nonetheless,
Alpha-1 antitrypsin deficiency
My Insurance Covered My Treatment. I Still Couldn’t Get It.
For more than 20 years, I had a treatment routine that worked. My specialty pharmacy delivered the medications I needed and coordinated trained nurses who
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Ebola – Lessons Learned
The Ebola outbreak in DR Congo was declared in May 2026. It is now the second worst on record with estimates that the death toll
Parkinson's Disease
ABLi Therapeutics Parkinson’s Research Results
As shared on GlobeNewswire, a biotechnology company called ABLi Therapeutics has released encouraging findings from a research study on a potential new Parkinson’s treatment called
Rare Disease
Samsung Secures FDA Clearance for Galaxy Buds Hearing Assistance Technology
As reported on Fierce Biotech, Samsung Electronics has obtained clearance from the U.S. Food and Drug Administration (FDA) for software features that transform select Galaxy
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First Patient in the World Treated With Gene Therapy for Cockayne Syndrome
Editor’s Note: This article was shared with us by Jo Kaur. To see it in its original format, please click here. Riaan Singh Digeorge,
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Qiagen Secures FDA Clearance for First QIAstat-Dx Bloodstream Infection Test in the US
As reported on PharmaBiz, Qiagen has received US Food and Drug Administration (FDA) clearance for its QIAstat-Dx BCID GPF Plus AMR Panel, marking the company’s
Spinal Muscular Atrophy
England to Add Spinal Muscular Atrophy to Newborn Screening Program in 2027
As reported on MedIndia, England is set to introduce nationwide newborn screening for spinal muscular atrophy (SMA) in October 2027, a move designed to accelerate
IgA Nephropathy
Otsuka Reports Two-Year Kidney Function Benefit With Sibeprenlimab in Phase 3 IgA Nephropathy Trial
Sibeprenlimab-szsi (VOYXACT) slowed estimated glomerular filtration rate decline versus placebo over 24 months in adult patients with primary IgA nephropathy, according to Phase 3 VISIONARY
Esophageal Cancer
Stephen’s Journey with Esophageal Cancer
My name is Stephen Savage. I’m happy to say I’m a cancer survivor. I was diagnosed in February, 2019 with a form of adenocarcinoma: esophageal
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Health Canada Prioritizes Review of FILSUVEZ for EB-Related Wounds
As reported of The Manila Times, Health Canada has granted priority review to Chiesi Global Rare Diseases’ new drug submission for FILSUVEZ® (birch triterpenes) topical
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Silence Therapeutics Advances Divesiran After Positive Phase 2 Results in Polycythemia Vera
As reported on Fierce Biotech, Silence Therapeutics reported positive phase 2 findings for divesiran, an investigational small interfering RNA (siRNA) treatment for polycythemia vera (PV),
Spinal Muscular Atrophy
Scholar Rock’s SMA Therapy Application Advances Despite Manufacturing Site Change
As reported on Drugs, Scholar Rock says the US Food and Drug Administration’s review of its biologics license application for apitegromab, an investigational treatment for
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From Breakdown to Breakthrough – Humberto’s Pemphigus Vulgaris Story
Last year, I came down with a severe autoimmune disorder. It came out of nowhere. And it was bad. I was hospitalized three times over
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Porter’s Perspective | A SYNGAP1 Sibling
Editor’s Note: We are honored to share this story from our friends at CURE SYNGAP. To see this article in its original format, please click
Multiple Sclerosis
From Diagnosis to Purpose: Nick’s MS Journey
It was 2013, I was 21 years old, studying abroad in Italy, living the semester every college student dreams about. Then I woke up one
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This week at Patient Worthy, we're focusing on osteoarthritis, one of the most common forms of arthritis and a condition that affects millions of people worldwide. While every experience is different, many individuals living with osteoarthritis face challenges related to mobility, pain, stiffness, physical activity, and maintaining their quality of life.
Throughout the week, we'll be sharing educational resources, patient perspectives, and stories from individuals navigating life with osteoarthritis. Whether you're living with the condition, supporting a loved one, working in healthcare, or simply interested in learning more, we invite you to follow along.
If you feel comfortable, we'd love to hear your story. Sharing your experience can help raise awareness, offer encouragement to others, and remind someone facing similar challenges that they are not alone. Click the link below to share your story and help amplify the voices of the osteoarthritis community.
ow.ly/NYRZ50ZAC2B
#PatientWorthy #osteoarthritis #ArthritisAwareness #JointHealth #PatientVoice #shareyourstory #chronicillness #PatientCommunity
The Mast Cell Disease Society, Inc.TMS support groups provide a welcoming space for patients and caregivers to connect, share experiences, and feel supported.
Explore the full schedule and learn more: buff.ly/iPS3BQo
