Tucsonans unite to raise awareness for Rare Disease Day

TUCSON, Ariz. (KGUN) — Rare diseases affect fewer than 200,000 Americans, and families in Tucson will gather Feb. 28 to raise awareness and support those navigating those diagnoses.

The Rare Disease Day event will be held next Saturday at the Children’s Museum Tucson, bringing together families and organizations that support people living with rare conditions.

Michael Miller is with the Autism Society of Southern Arizona. “It’s about uplifting all of the voices, raising all of the awareness, bringing acceptance in.”

According to the U.S. Department of Health and Human Services, doctors still do not know exactly what causes many rare diseases. In many cases, they stem from a change in a single gene.

While autism itself is not classified as a rare disease, Miller said there is significant overlap within the community.

“Obviously autism isn't a rare disease, but within the autism community there are so many rare comorbidities. So the overlap is very meaningful to us," Miller says.

Athena Kehoe

Miller said awareness and resources were limited when he was growing up.

“I fell between the cracks. It was easier for people to say like, oh, he's weird, oh, he has ADHD or whatever and ignore all of the greater symptoms. And at the time, so going through the 80s and the 90s, like the resources that were available to the autism community were low, the awareness was low. We hadn't even moved into the acceptance part of where we're at," Miller explains.

Now a father of five, Miller said his children’s diagnoses helped him better understand himself.

“It wasn't until I had these beautiful little children who got the diagnosis because we had moved, you know, three decades into the future, so now resources were available, the diagnostics were available," Miller explains.

He hopes the Feb. 28 event will help families feel supported and seen.

“You're not any less worthy of anything. You're not any less, period. You're not alone. There is hope. You're not less. We are here.”

The Rare Disease Day event will take place Saturday, Feb. 28, at the Children’s Museum Tucson. It runs from 9 a.m. to 1 p.m.

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Athena Kehoe is a reporter for KGUN 9, she joined the KGUN 9 team in July of 2024 after graduating from Arizona State University. Share your story ideas with Athena by emailing athena.kehoe@kgun9.com or by connecting on X/Twitter.