"I hated every single thing about this insidious disease ... I would have given anything ― my home, my limbs, my life ― to banish it. But its tentacles were too strong."
“'Give her time and she’ll surely catch up,' they said. 'She’ll be fine.' ... When Dalia was 9, she lost her ability to walk, talk, eat, and breathe without a ventilator."
"This is Rare Disease Week and I learned the hard way ... that most medical folks haven't encountered them and simply won’t be able to help when issues arise."
Two-year-old Maxwell Freed has a rare genetic disorder. His mother needs $1 million to save him.
Amber Olsen is racing against time to fund a gene therapy that might save her dying 5-year-old from a rare genetic disease.
The Beauty of Rare project also shows what it's like to care for someone with a rare condition.
A diagnosis like mine is only the beginning of an endless racetrack.
"Keep telling your story and eventually someone will listen."
“I realized that if I didn’t dedicate the rest of my life to trying to cure this disease, that no one else was going to do it."