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Podcast: Once Upon A Gene
Episode: Rare Disease Caregiving Post Childhood with Rare Mom and Advocate Karen McEwen
Description: ONCE UPON A GENE - EPISODE 132Rare Disease Caregiving Post Childhood with Rare Mom and Advocate Karen McEwenKaren McEwen has an 18 year old daughter with laryngeal cleft primary ciliary dyskinesia (PCD). Her and her daughter have been active advocates through speaking, writing and support groups. They're also fundraising for the PCD Foundation and working to get a PCD clinic at major hospitals in every state. EPISODE HIGHLIGHTSTell us about your family and your daughter Elana.My daughter Elana i...