Prince Frederik of Luxembourg dies at 22 from rare mitochondrial disorder
Frederik de Nassau died on March 1, in Paris, a day after internationally recognized Rare Disease Day, which takes place on ...
NYS needs rare disease advisory council
As founder and chief executive of Believe in a Cure, a nonprofit organization advancing research for FOXG1 syndrome, a rare ...
What is hantavirus, the rare disease that killed Betsy Arakawa, Gene Hackman’s wife?
Betsy Arakawa died from hantavirus pulmonary syndrome, a rare rodent-spread disease with a mortality rate up to 50% in the ...
The Observer7d
Rare Disease Day shines a light on diseases, community, initiatives
Patient Advocacy Initiative staff speak on Notre Dame’s Rare Disease Day event and impact for the rare disease community.
What Is Hantavirus? All About the Rare Disease Spread by Rats That Led to Betsy Hackman's Death
Gene Hackman’s wife Betsy died from hantavirus pulmonary syndrome, a flu-like virus linked to rodent droppings. Here’s what ...
News Medical on MSN9d
Advances in corneal healing research drive new treatments for rare eye diseases
Rare eye diseases are the leading cause of untreatable blindness in Europe and affect people of all ages. The RESTORE VISION ...
Crain's Chicago Business2d
Health Billing: Hospitals share Medicaid fears, lawmakers consider access for rare disease treatments
Health care advocates were out in full force at the Illinois Capitol this week, urging legislators to act on everything from ...
Philippine Daily Inquirer17d
National Rare Disease Week: Easing the pain of suffering in silence
But for those with rare diseases, it often raises more questions than answers. What comes next? Will treatment be available? How much will it cost? And perhaps the hardest question of all ...
WRIC7d
Rare Disease Day: Richmond mother turns grief into advocacy after losing son to rare disease
RICHMOND, Va. (WRIC) — Donna Reynolds of Richmond knows all too well the devastating toll that a rare disease can take, not just on an individual, but on an entire family. Her son, Kellan, was ...
The Boston Globe21d
‘That could be your family member’: Rare diseases affect 30 million Americans
One in 10 Americans suffers from a rare disease, a statistic that casts the label “rare” in new light. It also drives the work of the National Organization for Rare Disorders, a coalition of ...
Reuters17d
US health agencies postpone rare diseases event in an unusual move
Feb 21 (Reuters) - A two-day meeting aimed at raising awareness among policymakers and public about rare diseases scheduled for the end of the month has been postponed, the U.S. Food and Drug ...