The Zebra Network is a collaborative platform that empowers peer leaders 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.
Key benefits of the Zebra Network include:
Through these collaborative efforts, we enhance the effectiveness and sustainability of rare disease advocacy initiatives across the country.
The Zebra Network fosters a dynamic community of peer leaders through monthly gatherings and ongoing communication. Our dedicated resource website serves as a centralized hub for information sharing on critical policy legislation for topics such as genetic testing, newborn screening (NBS), copay assistance, step therapy, and prescription drug availability boards (PDAB). By collaborating closely with national organizations like NORD and EveryLife, we complement existing efforts and maximize our impact.
This project also provides seed grants to state advocacy organizations focused on a specific policy, system or process change. These Rare Disease State Action Grants fund 1 year grants of between $15K – 20K. Funds can cover operational needs related to the change sought including staffing, resources, lobbyist, etc. *See grant parameters for full details.
In addition, the Zebra Network provides a forum for shared services across states many states, providing cost-sharing opportunities to utilize systems such as:
For more information in joining or interest in supporting this effort, please contact us.