Pulmonary veno-occlusive disease
I Am Rare, I Am Here
My name is Rim Wafaa Bendjaada. I am 22 years old, a rare disease and pulmonary hypertension advocate from Algeria, living with pulmonary veno-occlusive disease
Advancing Precision Oncology: Digital Twins and Symbolic AI in Triple-Negative Breast Cancer
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Open-Source Image Analysis Tool Provides Quantitative Assessment of MASH in Mouse Models
Genomics England World Leading Research Study
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All the Warm Blankets
Editor’s Note: The following is an excerpt from Bird’s Eye View: Stories of a Life Lived in Health Care by Sue Robins. I remember every single
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Spatial Mapping Study Uncovers Distinct Molecular Changes Across Liver Regions in MASH
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Personalizing Endocrine Therapy Plans: Help Patients with Early-Stage, HR+ Breast Cancer Find Clarity About What’s Next
Editor’s Note: The following article was originally written and shared with us by Adriana Olivo, NP, Memorial Sloan Kettering Cancer Center. For many people with
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
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
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Alentis Deepens ADC Strategy Through New Claudin-1 Collaboration With PinotBio
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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
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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
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Patient by Diagnosis. Founder by Decision. By Camden Hill, Founder & CEO of Areluno Health I was 20 years old when my body started quitting
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Many Nondrug Treatments for Low Back Pain May Offer Good Value, Review Finds
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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
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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
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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
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Cure GRIN FoundationThank you to everyone who participated in our Healthcare Assessment! In collaboration with the Grin2b Foundation, Cacna1a Foundation, and CAMK2 Therapeutics Network, we set out to learn what care currently looks like for people with these rare neurodevelopmental disorders, and where the biggest challenges and gaps exist. We received an incredible 244 responses from the GRI community!
Together with the GRIN2B Foundation, we’re sharing the data collected specifically from GRI families in the infographic below.
The results highlight important challenges, including limited access to specialists, gaps in treatment, and the burden on families to coordinate care across providers.
Thank you to all the GRI families who shared their experiences and helped shine a light on these important healthcare needs!
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