Medicaid Changes May Cause ‘Avoidable’ Harm For Rare Diseases Patients—NORD

The work requirements for Medicaid enrollees could cause "avoidable" harm to the 30 million Americans living with rare ...
Live Science

Rare genetic disease makes scientists reconsider what the 'seat of fear' in the brain really is

People with a rare genetic disorder that damages the amygdala are helping neuroscientists rethink how the brain shapes fear, ...
STAT

How AI helped treat a newborn’s ultra rare disease. ‘It was almost like a light switch.’

The parents of Jorie Krause told the audience at STAT's Breakthrough Summit West about how AI helped their daughter who was ...
Brattleboro Reformer

Scott signs Rare Disease Advisory Council into law

The National Organization for Rare Disorders celebrated the signing of House Bill 46 into law by Governor Phil Scott, establishing a Rare Disease Advisory Council (RDAC) in Vermont.
New York Magazine

Did AI Alter the Course of This Baby’s Life?

This article was featured in New York’s One Great Story newsletter. Sign up here. The first nine days of Jorie Kraus’s life followed a pattern: problem, solution. Problem, solution. Problem: Jorie was ...

Cleveland Cavaliers owner Dan Gilbert turns grief over son’s rare disease into search for a cure

Dan Gilbert honors his son Nick by funding research into neurofibromatosis, the rare disease that took Nick’s life.
News Medical

Why Rare Diseases Still Go Undiagnosed

Rare diseases are defined as conditions affecting fewer than 200,000 people in the US or less than 1 in 2,000 in Europe. 1-2 While each disease is individually rare, collectively, they represent a ...
Acsh.org

“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 collectively impact millions of Americans, creating a healthcare system that’s ...
Chip Chick on MSN

She had a stroke at 29, then got diagnosed with a rare disease and underwent brain surgery

Most people in their twenties are worried about career changes, dating, or figuring out what they actually want to do with ...
The Connecticut Mirror

Why my daughter’s rare genetic disorder is CT’s moral imperative

Connecticut prides itself on strong schools, world-class healthcare, and a commitment to caring for its most vulnerable residents. We are a state that values education, innovation, and community. Yet ...

Woman born with rare disease turns struggle into advocacy

Melissa DiVietri was born with sacral agenesis, a rare disease affecting 25,000 people worldwide, and uses art and advocacy ...
Briefly on MSN

Werner syndrome: Explaining the rare genetic disorder behind South African woman’s rapid ageing

Werner Syndrome is a rare genetic disorder that causes rapid premature ageing. It has no known cure and is what a South African woman has been was diagnosed with.