Mother with rare ALS touts 'miracle drug' that has stopped her disease
Raziel Green, 52, an active runner and mother of two, was diagnosed with a rare form of ALS in 2017. Since starting a clinical trial nearly eight years ago, her symptoms have not gotten any worse.
What is PolG? The rare genetic disease that ended a young prince's life
Prince Frederik of Luxembourg died from a genetic disease called PolG, but experts hope his passing could bring more ...
American Council on Science and Health3d
“Rare” but Not Uncommon: The Hidden Crisis of Rare Diseases
Rare diseases - a medical condition so obscure that even your doctor has to Google. Despite their name, these diseases ...
Threat to son's treatment for rare disease 'agony'
A mother has spoken about her "painful" experience over the potential end to her son's life-enhancing treatment for a rare ...
My son’s rare disease diagnosis spurred me to ditch Big Pharma for a biotech startup
Most individuals diagnosed with a rare disease won’t live to become teenagers or adults. I knew what I had to do.
First responders continue to help young girl with rare disease collecting patches to decorate hospital room
ROCKY HILL, Conn. (WFSB) - First responders continue to meet the request for a young girl with a rare disease. Earlier this ...
Prince Frederik of Luxembourg dies from rare disease
Prince Frederik of Luxembourg, the youngest son of Prince Robert of Luxembourg and Princess Julie of Nassau, has died after a ...
What Is Hantavirus, the Rare Disease That Killed Betsy Arakawa?
Ms. Arakawa, the wife of the actor Gene Hackman, died from the effects of a disease often caused by contact with droppings ...
SHINE9h
Shanghai exhibition welcomes artwork from rare disease patients, including expats
At an event announcing the launch of the exhibition, Zhai Jin, a patient with osteogenesis imperfecta, a genetic bone ...
Tallahassee Democrat12d
FSU's Rare Disease Day spotlights promising research for families
Rare Disease Day, recognized globally on the last day of February since 2008, is intended to raise awareness to the approximately 7,000 known rare diseases affecting 300 million people worldwide.
A Young Prince of Luxembourg Dies of a Rare Genetic Disease
Prince Frederik, 22, was a founder and the creative director of a foundation that raised awareness of POLG disorder.