A HealthBeat Special Series

Rare Diseases

One in 10 people in the United States has a rare disease. Half of those affected by rare diseases are children. There are more than 7,000 rare diseases identified, and many more being discovered as advances are made in the field of genomics. Learn about genetic conditions and hear from people who see only beauty in differences.

Health Beat Special Series
Patient Story

A crowning moment for Huntington’s disease

Shelby Lentz is competing for the Miss Michigan title. But since her diagnosis, she's now competing in a race against time.

Patient Story

New study scrutinizes birth defects

Michigan family hopes their participation in long-term, international research will shed light on their young daughter's medical troubles.

Patient Story

‘The most perfect little guy’

Sweet and smiley Camden Cardona has a rare genetic disease―tuberous sclerosis―and a team of experts to help him.

Patient Story

A first-ever therapy for spinal muscular atrophy

“Nervous and kind of excited,” 14-year-old Malorie Fox prepares to receive a new treatment.

Patient Story

You’re one in a billion, baby boy

Little Hayden, born with two rare disorders, might be the first of his kind. His parents treasure his uniqueness.

Patient Story

Gabe’s story

Gabe Dehen, 2, has a terminal genetic condition—but his parents are clinging to hope for a miracle.

Patient Story

‘I am a mystery’

With courage and smiles, Addison Post battles an extraordinarily rare condition.

Patient Story

‘You are my sunshine, my only sunshine’

Born with an ultra-rare condition that caused her brain to outgrow her skull, little Kenzie Bennett is 'still smiling at life.'

Patient Story

Boy’s mystery illness leads to genetic breakthrough

A doctor’s persistent effort to help one child leads to remarkable cancer discovery.

‘We take it day by day’

After a rare kidney disease strikes three of their four sons, requiring back-to-back transplants, the Brann family has high hopes for a 'normal' 2016.

Patient Story

‘It was not a choice’

Adopting children with a rare blood disorder brings two families together with a noble purpose.