Episode 5: Jennifer Siedman | Making Space for Care, Grief, and Hope

Jennifer Siedman brings a steady, thoughtful presence to conversations that many families struggle to name. As a parent and leader at Courageous Parents Network, her work focuses on helping families navigate serious illness with clarity, compassion, and support, especially when there are no easy answers.

In this episode, Jennifer reflects on how her personal journey informs the topics Courageous Parents Network engages with, including different types of grief, the evolving meaning of hope, and the emotional complexity of decision-making in medical care. We talk about how families live with uncertainty over time, and why support must extend beyond moments of diagnosis or crisis.

This conversation adds an important layer to the Rare Rebels™ map by centering care that is relational, ongoing, and deeply human. It highlights the role of guidance, language, and presence in helping families feel less alone as they navigate medical complexity and the long middle spaces of rare disease.

Guest: Jennifer Siedman — Parent and nonprofit leader at Courageous Parents Network, equipping families of medically complex children with language, guidance, and support to navigate care, grief, and decision-making.

About Rare Rebels™ Rare Rebels™ is an ongoing effort to map the rare disease ecosystem through the people leading the charge, documenting how change happens and how connections across science, advocacy, and lived experience shape what becomes possible.