Today, the American Kidney Fund (AKF) and the IgA Nephropathy Foundation are on Capitol Hill with more than 80 advocates who are living with rare kidney diseases to urge elected officials to support ...

NORWELL, Mass., Feb. 23, 2026 /PRNewswire/ -- The National Organization for Rare Disorders (NORD®) is calling attention to rare diseases as a significant and growing public health challenge affecting ...

Denny Ladkani lives with Duchenne Muscular Dystrophy, a rare genetic disease that causes progressive muscle degeneration and weakness throughout the body.

Researchers from Kennedy Krieger Institute, University of Rochester Medicine and five other institutions released a new ...

The National Organization for Rare Disorders (NORD®) is honoring a distinguished group of biopharma industry leaders, medical scientists, and patient advocates for their contributions to improving the ...

The first global assessment of rare neurological diseases in children finds rising prevalence and disability from 1990 to 2021, declining mortality, and a projected 11.83 percent increase in cases by ...

BRADENTON, Fla. — It’s a disease that’s compared to ALS — slowly weakening the muscles, leaving the patient without the ability to walk, use their hands, and eventually their ability to swallow. It’s ...

On paper, I am rare. In real life, I am the man waiting in OPD queues, googling symptoms at 2 a.m., and nodding politely when someone says, “But you look fine.” Rare feels ordinary — until it doesn’t.

IndoUSrare & GORD announce 2026 Abbey Meyers Khushi Bridging RARE Award honorees! Join us Nov. 1, Manassas, VA for an ...

Canada’s rare disease diagnostic challenge cannot be solved by genomics and data alone; it requires investment in the people, expertise, and clinical systems needed to recognize rare diseases earlier ...

Since acquiring the global rights to edaravone, a treatment for amyotrophic lateral sclerosis (ALS), known as RADICAVA ® in ...