Local family gets answers thanks to IU Rare Disease Clinic
The brilliant and beloved physical comedian, Lenny Schultz has died at the age of 91. The news was confirmed by his son, Mark ...
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 ...
The Citizen6h
Volunteers create awareness surrounding Rare Disease Day
Rare Disease Day was observed last Friday by a group of volunteers who took an hour out of their schedule to create awareness ...
Pharmaceutical Commerce1h
PAP 2025: The Impact of Out-of-Pocket Costs on Patients with Rare Diseases
Jonathan James, CEO, Hope Charities, discusses the critical importance of maintaining access to life-saving medications for ...
Experimental drug may slow dementia onset for patients with rare genetic form of Alzheimer’s
An experimental treatment showed promising early results for reducing the risk of dementia related to Alzheimer’s for ...
American Council on Science and Health6d
“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 ...
For kids with extremely rare diseases, this promising technology provides a lifeline | Opinion
Genetically targeted technologies are built on Nobel Prize-winning science. They represent a scientific “quantum leap” that ...
Mother with rare ALS touts ‘miracle drug’ that has stopped her disease
Eight years after receiving a life-shattering diagnosis, a New Jersey mother credits an “amazing” new drug for stopping her ...
Cherokee Phoenix5d
Cherokee Nation Rare Disease Task Force outlines recommendations tribe can take to assist those with rare diseases
The Cherokee Nation Health Services Rare Disease Task Force has released a report outlining progress made over the past year ...
Dominican Today19h
Rare disease causes mass pig deaths
Dajabón.- Pig farmers in El Pino, Dajabón, are alarmed by a mysterious disease that has killed hundreds of pigs, raising fears of a resurgence of African swine fever. The illness spreads rapidly, with ...
SHINE2d
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 ...