Group gathers to bring awareness to rare diseases affecting Oklahomans

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OKLAHOMA CITY – When you think about diseases, heart disease or cancer may come to mind.

However, a group of Oklahomans are working to bring awareness to lesser known conditions that are affecting people across the globe.

Friends, family members and caregivers gathered at the Oklahoma Capitol on Monday for Rare Disease Awareness Day. The event works to educate the public and give a face to a variety of rare diseases, including some with names too difficult to pronounce.

The diseases don’t discriminate and affect those both young and old.

Rachel Daniels’ 2-year-old daughter suffers from Lipodystroph, a fatty tissue disorder that causes the body to not process fat properly, so it attaches the fat to vital organs.

“We’re hoping to get Lipodystrophy out there, get the name out there, get out faces out there, get some treatment and get some help. We’re here to represent all rare diseases,” Daniels said.

The grassroots effort encompasses families that deal with rare and uncommon health issues every day.

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