Members – State Zebra Network

Welcoming State 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)

Become a Member

State Coalition Leaders

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 Stakeholders

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)