Beyond Rare: One Family's Story, A National Conversation

About this episode

The episode discusses advocacy and policymaking in the context of rare diseases through the lens of personal stories.

On the heels of “Rare Disease” Month in Washington, 14th & G host Dean Rosen goes "Beyond Rare" with two rare disease leaders. Rosen discusses advocacy and policymaking with Ultragenyx Executive Director of Public Policy and Public Affairs Lisa Kahlman and spotlights the powerful story of how two parents transformed their daughters’ diagnosis into a mission to drive research, policy change, and hope, featuring Firefly Fund co-founder Pam Andrews.

People in this episode

Host: Dean Rosen

Guests: Lisa Kahlman, Pam Andrews

Topics covered

• rare diseases
• advocacy
• policymaking
• healthcare
• research
• family stories

Keywords

• rare disease
• advocacy
• policy change
• healthcare
• research
• family
• story

Mentioned in this episode

Organizations: Ultragenyx, Firefly Fund