PHGW: Beyond Diagnosis: Rare Disease Advocacy

We talked about the vital role that advocacy plays in driving research and policy changes to improve outcomes for those with rare genetic disorders. Our expert panel included Mat Edick, Ph.D., Director of the Center for Strategic Health Partnerships, MPHI, and special guests from Rare Disease Advisory Councils (RDAC).

RDACs act as an advisory body that gives the rare disease community a stronger voice in state government. Watch to learn more about the important role RDACs play in representing the rare disease community and how you can take action.

This is an important public health conversation that you won’t want to miss!

Participants:
– Mat Edick, Director, Center for Strategic Health Partnerships, MPHI
– Megan Lyon, MPH, Co-Project Director of the National Coordinating Center for the Regional Genetics Networks (NCC)
– Amy Gaviglio, Public Health Genetics and Genomics Consultant, Connetics Consulting