What happens when your child is born with a rare condition that most doctors have never seen?
When Amy Schefer's daughter, Lazer, was born missing nearly a third of her jaw, Amy was thrust into a world of medical uncertainty, complex healthcare systems, and constant advocacy. What began as a mother's fight to get her daughter the care she needed became a lifelong mission to help other families navigate the challenges of rare disease.
Today, Amy is the founder of AdvocateAngel, a platform dedicated to helping patients, caregivers, and healthcare teams communicate more effectively, reduce overwhelm, and improve outcomes. She is also the creator of the Rare Aware Scorecard, a practical tool designed to help families identify strengths and gaps in their healthcare journey before those gaps become barriers to care.
In this powerful conversation, Amy shares:
✨ What it was like raising a child with a rare craniofacial condition
✨ The hidden challenges families face in the healthcare system
✨ How nervous system regulation impacts medical appointments and decision-making
✨ Why advocacy is a skill anyone can learn
✨ Practical tools to help patients, caregivers, and providers work together more effectively
✨ What healthcare professionals can do to better support rare disease families
Whether you're living with a rare disease, caring for someone who is, navigating a complex diagnosis, or simply trying to become a stronger advocate for your own health, this episode is packed with insight, wisdom, and hope.
🎙️ Autoimmune Adventures is a podcast dedicated to helping people with chronic illness feel seen, supported, and empowered to advocate for themselves.
🌐 Learn more about Amy and AdvocateAngel:
https://advocateangel.com
You are worthy of joy. Your disease does not define your life. You do.
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