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RareGuru Press Kit
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In the News
My Constant Insomnia Turned Out to Be a Symptom of a Rare Disorder Called Hypophosphatasia

July 9, 2020

After doctors couldn't figure out why she was suffering such terrible insomnia, Heather Barrow, 41, did her own research—and she learned she was born with a rare genetic disorder that also affected her mom and teenage daughter.

Watch the video here.

Global Genes
App Helps Rare Disease Patients Find Others with the Same Condition

May 8, 2020 | Daniel Levine

“It’s inspiring to see my family and me have this idea and go through with it instead of having it and saying, ‘It’s a good idea and maybe we’ll do something in the future and never get to it,” said Claire. “For the hopefully thousands of people it reaches, I hope it can help them.”

Read the full article here.

WTSP 10 News
Tampa teen creates app to connect people fighting rare diseases

WTSP 10 News | Bobby Lewis (May 4, 2020)

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