As reported on PharmaBiz, Merck has announced a new agreement with the ADAP Crisis Task Force (ACTF) aimed at improving access to its recently approved
As reported on MedPage Today, large retrospective study suggests that glucagon-like peptide-1 (GLP-1) receptor agonists may offer broad health benefits for patients with hidradenitis suppurativa
As reported on BioSpace, Sarepta Therapeutics has reached an important regulatory milestone in its effort to secure traditional FDA approval for two Duchenne muscular dystrophy
As reported on Tech Times, Sanofi has reported positive results from its Phase 3 Baby-COMET study evaluating Nexviazyme (avalglucosidase alfa) in infants with infantile-onset Pompe
Editor’s Note: Patient Worthy is honored to share this interview, featuring Kate, an ovarian cancer survivor, and Dr. Premal Thaker, M.D. “There is fear, and
As reported on PharmaBiz, the US Food and Drug Administration (FDA) has approved Orca Bio’s Tregzi, a precision-engineered cell therapy designed for use in matched-donor
As reported on FiercePharma, the U.S. Food and Drug Administration (FDA) has approved an expanded indication for Vertex Pharmaceuticals’ gene-editing therapy Casgevy (exagamglogene autotemcel), allowing
As reported on PharmaBiz, Ascletis Pharma has announced the submission of two Investigational New Drug (IND) applications to the US Food and Drug Administration (FDA)
As reported on Pharmaceutical Technology, the European Commission has approved Novartis’ gene replacement therapy Itvisma (onasemnogene abeparvovec) for the treatment of children aged two years
As reported on BioSpace, BridgeBio Pharma has reported new findings suggesting that its transthyretin (TTR) stabilizer, Attruby (acoramidis), may help preserve kidney function in patients
As reported on Healio, new phase 3 data suggest that sonelokimab may offer durable disease control for patients with moderate to severe hidradenitis suppurativa (HS),
New research from the 2026 American Society of Clinical Oncology (ASCO) annual meeting, and presented on Cure Today, highlights an encouraging new treatment on the
Editor’s Note: Patient Worthy is honored to share this article from our friend Abigail Johnston, originally published on her blog No Half Measures. To see
In recent reports on MSN and AdventLS, it was shared that, as a result of the pioneering efforts of Dr. Carla Nester and researchers at
Our friends and contributors at the TREND Community have provided us with another enlightening article, this time about high-quality human-generated data becoming a scarce and
What Happened? The healthcare company Grifols announced in a recent press release that it has enrolled and dosed the very first patient in a new
Editor’s Note: Patient Worthy is proud and honored to share this article, provided by our friends at The Assistance Fund. Every year, thousands of families
As reported on BioSpace, Praxis Precision Medicines has received a three-month extension to the U.S. Food and Drug Administration’s review of relutrigine, its investigational therapy
Living with hidradenitis suppurativa can be challenging, but treatment is not one-size-fits-all. With the right care plan, many people are able to reduce flare-ups, manage symptoms, and improve their quality of life. Learning about your treatment options and working closely with your healthcare team can help you take control of your condition, one step at a time. Click the link to share your story today - ow.ly/aHib50Zmgvp
#HidradenitisSuppurativa #hswarrior #PatientWorthy
THIS or THAT: Doctor's Appointment Edition!
When you're living with a rare or chronic illness, healthcare appointments can be a regular part of life—but everyone has their preference!
🏥 This: In-person doctor's appointment ✅ Face-to-face conversations ✅ Hands-on exams ✅ More personal interaction
💻 That: Virtual appointment ✅ No travel time ✅ Attend from the comfort of home ✅ Easier access to specialists
Both have their perks, and what works best can depend on your symptoms, schedule, and healthcare needs.
💬 Tell us in the comments: Are you Team In-Person 🏥 or Team Virtual 💻? Bonus points if you share why you prefer one over the other!
Let's compare notes and hear what works best for our amazing community of patients and caregivers.
#thisorthat #raredisease #chronicillness #patientadvocacy #caregiversupport #RareDiseaseCommunity #chronicillnesswarrior #PatientVoice #HealthcareJourney #telehealth #PatientWorthy #StrongerTogether
For many people living with a rare disease, the journey doesn't always end with a diagnosis or treatment. Lasting effects can continue to impact daily life, requiring ongoing care, adjustments, and support. Raising awareness of these long-term challenges helps foster a better understanding that the impact of a rare disease often extends far beyond the initial diagnosis.
#rarediseaseoftheweek #raredisease #rarediseaseawareness #PatientWorthy
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