Fibrodysplasia Ossificans Progressiva (FOP)
The Road to Diagnosis – Holly’s FOP Story
Editor’s Note: The following story was originally written and shared with us by Holly M. LaPrade. Thirty years ago, a small army of doctors cautiously
Spatial Mapping Study Uncovers Distinct Molecular Changes Across Liver Regions in MASH
The Struggle Beneath the Struggle: Letting Go of Resistance
Personalizing Endocrine Therapy Plans: Help Patients with Early-Stage, HR+ Breast Cancer Find Clarity About What’s Next
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Clear cell renal cell carcinoma
New Molecular Scan Shows Promise for Mapping Clear Cell Kidney Cancer
Clear cell renal cell carcinoma (ccRCC) is the most common type of kidney cancer. It begins in the kidney’s filtering cells and gets its name
Rare Disease
Alentis Deepens ADC Strategy Through New Claudin-1 Collaboration With PinotBio
As reported on Pharmaceutical Technology, Alentis Therapeutics has expanded its efforts in claudin-1-targeted cancer therapeutics through a newly announced partnership with PinotBio, aimed at generating
Cancer
Danish Study Examines Childhood Cancer After Fertility Treatment
As reported on Inside Precision Medicine, a large study from Denmark found that children conceived with certain assisted reproductive technologies had a higher relative rate
IgA Nephropathy
Otsuka’s Phase 3 VISIONARY Study Suggests Voyxact May Alter Disease Course in IgA Nephropathy
Final two-year data from the Phase 3 VISIONARY trial indicate that Voyxact (sibeprenlimab-szsi) may significantly slow progression of primary immunoglobulin A nephropathy (IgAN), preserving kidney
Rare Disease
Reinvigorating the Biological Clock: How a Diabetes Target Could Help Combat Ovarian Aging
One of the most persistent hurdles in biology is the natural, age-related decline of female fertility. As women age, both the quantity and quality of
Myasthenia Gravis
The Space Between Appointments
Patient by Diagnosis. Founder by Decision. By Camden Hill, Founder & CEO of Areluno Health I was 20 years old when my body started quitting
Rare Disease
Many Nondrug Treatments for Low Back Pain May Offer Good Value, Review Finds
Exercise, yoga, psychological support and other approaches that do not involve medication or surgery may help people with low back pain—and may be cost-effective, according
Colorectal cancer
Alliance Announces FDA Approval of Atezolizumab Based on Results from the Phase III ATOMIC Trial for Patients with Stage III dMMR Colon Cancer
Editor’s Note: This article, reprinted in full, was originally written and shared with us by Alliance. To see the article in its original format, please
Hunter Syndrome
Jay’s Hunter Syndrome Story
All genetic testing we did for Jay during pregnancy came back normal (though we did the bare minimum). When he was born, he struggled to
C. Diff
Experimental Treatment Targets C. diff While Sparing More of the Gut’s Microbes
A C. diff infection can turn a hospital stay into a much harder experience. The bacterium can cause severe diarrhea, abdominal pain and inflammation of
Parkinson's Disease
Claudine’s Deep-Dive into Parkinson’s Disease and Functional Neurologic Disorder
So, Parkinson’s Disease (PD) vs Functional Neurologic Disorder (FND) seem to join the other medical acronyms. What do these medical acronyms stand for? We have
Inclusion Body Myositis
A Journey of Hope, Strength, and Advocacy: Living with Inclusion Body Myositis
My journey with inclusion body myositis (IBM) has taught me that even when life takes an unexpected turn, hope, faith, determination, and the support of
Renal Cell Carcinoma
FDA Approves Belzutifan Plus Lenvatinib for Previously Treated Advanced Clear Cell Renal Cell Carcinoma
As reported on PharmaBiz, the US Food and Drug Administration (FDA) has approved the oral combination of belzutifan (Welireg) and lenvatinib (Lenvima) for adults with
Metabolic dysfunction-associated steatohepatitis
Late-Night Snacking, Sugar, and the Road to Liver Health
Many people spend very little time contemplating their liver, often ignoring this critical organ until a major medical issue arises. In contrast, health culture in
Lymphoma
When Cancer Comes With a Mortgage: How One Florida Town Turned a Beach Concert Into a Lifeline
Editor’s Note: This story was submitted to Patient Worthy by Roger Templeman, Executive Director of Stabilize Revitalize Fort Pierce (SRFP), a grassroots nonprofit in Fort
IgA Nephropathy
Transforming the IgA Nephropathy Treatment Landscape
For decades, patients diagnosed with IgA nephropathy—an autoimmune condition where trapped immune complexes inflame and damage the kidney’s filtering units (glomeruli)—faced a discouraging outlook. Typically
Metabolic dysfunction-associated steatohepatitis
AstraZeneca Expands AI-Driven Drug Discovery Efforts in MASH and Cardiomyopathy
As reported on BioSpace, AstraZeneca has entered a major artificial intelligence-focused research collaboration with biotechnology company insitro, committing up to $1.5 billion in potential payments
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For those living with epidermolysis bullosa (EB), even the simplest everyday activities can come with challenges that others may never see.
During Epidermolysis Bullosa Awareness Week, we're shining a light on the individuals and families navigating life with EB and the importance of greater awareness, understanding, and support.
Every story deserves to be heard, and every voice has the power to make a difference. If you'd like to share your story with EB, click here: ow.ly/4xrf510277v
#EBAwarenessWeek #EpidermolysisBullosa #rarediseaseawareness #PatientVoices #PatientWorthy
Changes in cognitive function aren't always easy to recognize or understand. For individuals experiencing bradyphrenia, everyday activities like following conversations, making decisions, or completing tasks may require more time and effort. This symptom can occur with certain neurological conditions and may affect independence, communication, and overall quality of life. Raising awareness helps highlight the importance of understanding cognitive symptoms that aren't always visible to others.
#rarewordoftheweek #raredisease #rarediseaseawareness #PatientWorthy
Living with a rare or chronic condition can shape your days, but it doesn’t define all that you are. Your hopes, joys, and sense of self are yours to hold and shape... through every chapter. 💙#RareDisease #ChronicIllness #PatientWorthy
