United. Innovative. Actionable.
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.
Members
Are you a state coalition leader, a stakeholder, or an affiliated partner? If so, we’d love for you to join! Visit our membership page for more information.
Events
What better way to continue to grow your state coalition than to collaborate with other state coalitions? View our events page to see upcoming Zoom topics.
Resources
We are proud to serve as a repository for State Coalitions resources! We encourage you to visit our Resources, Knowledge Center, and Legislation pages.
The need for state advisors and state alliances are of emerging importance.
As of June 2025, the following exists:
Working together, we can make a difference for rare disease policies in the US!
About Us
The State Zebra Network is a platform to empower peers to drive needed rare disease policy change at the state level. 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.
Launched in 2025, this coalition of coalitions fosters knowledge, mentoring and resource optimization. The network utilizes a stakeholder “hub” concept which allows for substantive sharing on key policy issues quickly across many states.
Commitment to Collaborate
The members of this Network engage regularly with rare disease organizations that support state, territory, national, and global advocacy. This collective work aligns, supports, and champions efforts to drive rare disease.
