Members

Welcoming State Coalition Leaders and State Government Affairs Leaders in Rare Disease!

The network is built on a peer leadership mentoring model, conducting regular meet-ups to share resources, tools, and tips, and collaborate across states.

This is an action focused group of individuals leading state advocacy in their states. We are here to GSD! (Get “Stuff” Done)

Who Can Join the State Zebra Network?

State Coalition Leaders who are launching or are running rare disease state or territory coalitions. Coalitions may be run through an individual rare disease nonprofit but the state coalition must be broad to cover all rare disease. Leadership staff or Board Members. (Free Membership)

State Based Stakeholder Leaders who are actively involved in rare disease advocacy leadership in their state. Examples include Rare Disease Advisory Council members (RDAC), rare disease medical providers, other leaders. (Free Membership)

Affiliated Partners (Corporate) government affairs professionals who are leaders working in rare disease. Must have common goals with state-based rare disease coalition organizations and be able to work collaboratively as peers with state-based rare disease coalition leaders. (Fee Based Membership)

Benefits of Membership

State Coalitions Leaders

Regular peer meet ups
Peer mentoring
Best practice sharing
Strategy/tactics planning
Shared services

State Based Stakeholder Leaders

Rare disease education
Perspectives series calls (virtual)
State based resources
Advocacy tools and tips

Affiliate Partners (Corporate)

Focused virtual meetings
Regular sharing
Priority setting
Rapid access

Contact Us
to learn more and join!

Participating State Coalitions (2025)

Alabama Rare

Michigan

North Carolina

Wisconsin Rare

TBD

State Zebra Network Advisors

Swapna Kakani, MPH