Welcome to the
State Zebra Network
An agile network of like-minded stakeholders dedicated to state rare disease policy activation. We are an alliance of state coalitions working together to protect current and new state policies benefiting rare disease.
United. Innovative. Actionable.
ABOUT US
The State Zebra Network is a collaborative platform that empowers peers to drive impactful rare disease policy change at the state level. By fostering knowledge, sharing, mentorship, and resource optimization, we strengthen the capacity of state-based advocacy efforts.
Launched in 2025, this coalition of coalitions was formed to fill the gap. State advocacy and policy is varied, often fast-paced, and filled with nuances of the state/region working within. Leaders are moving fast and need a network of peers to learn from and rely on. The network utilizes a stakeholder “hub” concept which allows for substantive sharing on key policy issues across many states with a goal to expediently and effectively impact rare disease state policy.
State Zebra Network Cooperation
The members of this Network collaborate regularly with rare disease organizations that support state, territory, national, and global advocacy efforts. It is the intent of this Network to fill a gap to bring state coalition leaders together to regularly align, support, and champion.