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 ...
American Council on Science and Health4d
“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 ...
Euractiv2h
Bulgarian rare disease patients urge government to fund compassionate drug use
Insufficient screening, very low age limits, and problematic diagnosis continue to disproportionately affect patients with ...
Live Science on MSN5d
POLG diseases: Rare genetic conditions that starve cells of energy and afflicted the late Prince of Luxembourg
POLG-related diseases disrupt the function of the mitochondria, or "powerhouses" of the cell — starving them of energy.
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 ...
FOX 4 News Dallas-Fort Worth on MSN18h
North Texas mother hopes 14-year journey with rare heart disease inspires others
DALLAS - A North Texas mother diagnosed with a rare heart disease at 22 years old has been on a 14-year journey of faith and ...
Jacobs School of Medicine and Biomedical Sciences - University at Buffalo10d
Rare Disease Day Event Focuses on Raising Awareness
UB hosted a Rare Disease Day program at the Jacobs School of Medicine and Biomedical Sciences to raise awareness of rare diseases.
Shooting for a cure: Hope for Harlow fundraiser to raise money for rare disease research
"Years ago when we got her diagnosis, we had no hope and now we have become a force to be reckoned with," sai Harlow's mother, Kim Higbee.
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.