At the HLTH conference last year, one of the most amazing people I met was a lady an awesome chick named Effie Parks. She was attending HLTH to receive a WEGO Health Award for her work on the Once Upon a Gene podcast. I learned so much from her and was so touched by her story that I knew I had to have her on the Healthcare IT Today Interviews podcast.
What makes Effie Parks special is that she’s an incredible human. What makes her healthcare story interesting is that she was a new parent of a child with a rare genetic syndrome. She felt lost and without a guide until she found a podcast that talked about other rare diseases. Those stories gave her strength and the feeling that she wasn’t alone. She started the Once Upon a Gene podcast to share more of the rare disease stories she finds and to share her experience navigating the healthcare system as a caregiver of a child with a rare disease.
Check out our interview with Effie Parks below to learn more about her story and experience with her podcast. Plus, she shares insights into her experience with the rare disease community and how it’s been ignored by many but shouldn’t be. I also ask her to share how health IT companies could better serve patients like her son and caregivers like her.
If you want to be inspired and reminded of the important work we do in healthcare, you’ll enjoy this interview with Effie Parks from the Once Upon a Gene podcast.
Be sure to subscribe to Effie’s Once Upon a Gene podcast: https://effieparks.com/podcast
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