Rare KC hosts event to raise awareness for those with rare disea - KCTV5

Rare KC hosts event to raise awareness for those with rare diseases

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"We're from Omaha, NE so we drove down three hours last night," said Lindsey Elsaesser, another attendee.  Evie Elsaesser is 7 years old, and she was diagnosed with a disease that makes her bones softer than other kids called hypophosphatasia. (KCTV5) "We're from Omaha, NE so we drove down three hours last night," said Lindsey Elsaesser, another attendee. Evie Elsaesser is 7 years old, and she was diagnosed with a disease that makes her bones softer than other kids called hypophosphatasia. (KCTV5)
KANSAS CITY, MO (KCTV) -

Families across the country impacted by a rare disease gathered in Kansas City Thursday morning.

Some families drove hundreds of miles to attend the Rare KC Summit.

"We're from Indiana so it was about six and a half hours," said Ashley Miller, who attended the event.

"We're from Omaha Nebraska so we drove down three hours last night," said Lindsey Elsaesser, another attendee.

Evie Elsaesser is 7 years old, and she was diagnosed with a disease that makes her bones softer than other kids called hypophosphatasia.

The Elsaessers found support groups online but say there's nothing like meeting with people with similar journeys.

"I ask other moms questions, we compare X-rays all kinds of things that shows us that we're not alone and they're not alone," Lindsey Elsaesser said.

Rare KC was founded a couple of years ago by Kelly Ranallo, a local mother whose child was diagnosed with a rare disease. Since then, she's made it a mission to be the voice for these families

"If we can create a voice of 250,000 people than what am amazing and uniform platform we would have," said Ranallo.

She says based on the families needs, an organization like Rare KC is long overdue.

"We're actually thinking about relocating to Kansas City there's just more resources here for Madison," she said.

Click here to learn more about Rare KC.

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