rare disease

I Lost My Daughter To A Rare Disease, But It's What I Did After That Surprises People The Most

"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."
By 

My Daughter's Rare Disease Was A Mystery For Years. Here's How We Finally Got A Diagnosis.

“'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."
By 

My Baby Was Born Without An Anus. This Is What I Learned About Advocating For My Child.

"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."
By 

Life And Debt: Searching For A Million-Dollar Miracle

Two-year-old Maxwell Freed has a rare genetic disorder. His mother needs $1 million to save him.
By 

One Mom Is Trying To Save Her Daughter From A Rare Disease. Time Is Running Out.

Amber Olsen is racing against time to fund a gene therapy that might save her dying 5-year-old from a rare genetic disease.
By 
and

Powerful Photo Series Highlights The Experiences Of Those Who Live With A Rare Disease

The Beauty of Rare project also shows what it's like to care for someone with a rare condition.
By 

Opinion | When Medicine Is A Business, Rare Disease Patients Suffer

A diagnosis like mine is only the beginning of an endless racetrack.
By 

Artist Creates Eye-Opening Illustrations About Her Rare Disease

"Keep telling your story and eventually someone will listen."
By 

Young Doctor Diagnosed With A Death Sentence Hopes To Cure Himself -- Before It's Too Late

“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."
By 

My Illness Is NOT My Life's Story

By