When she learned that her son Ford had been born with an extremely rare genetic condition – CTNNB1 syndrome – Effie Parks dove into the world of advocacy. Now, she is the host of her own podcast, Once Upon a Gene, where she speaks to others about their journey through life with rare disease. Since the launch of the podcast, Once Upon A Gene was awarded “Best In Show Podcast” by WEGO Health. Her mission is to learn, lift voices of the community, connect people to resources and to leave this world better than she found it for others in the rare disease world
In episode #180, Effie interviewed Rare Patient Voice President Wes Michael on patients and caregivers getting connected to research opportunities and being compensated to tell their stories. Listen to the episode, which aired March 30, 2023, here:
https://effieparks.com/podcast/episode-180-rare-patient-voice-founder-wes-michael