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The State Zebra Network

A RareLab Pilot Program

How We Work

Coalition of state coalitions for effective, efficient and sustainable state advocacy

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:

  • Peer-to-peer support and mentorship
  • Exchange of best practices and expertise
  • Ideation and innovation through collaborative problem-solving
  • Shared access to resources and services

 Through these collaborative efforts, we enhance the effectiveness and sustainability of rare disease advocacy initiatives across the country.

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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.

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In addition, the Zebra Network provides a forum for shared services across states many states, providing cost-sharing opportunities to utilize systems such as:  

  • Legislative System (example: Voter Voice)
  • Project Planning / Management System (example: Click Up)
  • Email / eBlast system (examples: Constant Contact, Mailchimp)
  • Shared Staffing, examples:
    • Social Media services to post regular socials / emails
    • Technology staffing services to update or maintain websites, develop membership databases
    • Translation staffing services to develop (Spanish only) translated documents
    • Other, TBD based on evolving needs

For more information in joining or interest in supporting this effort, please contact us.

Working in zebra scarves

 

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