Advocate in Your State

A State Organization is a structure for rare disease advocates in a state to gather to unite the community’s rare disease stakeholders. Its purpose is to increase awareness of the rare disease journey and impact state policy. State organizations can advocate for state and federal legislation, community coordination, and rare disease education, to name a few examples. Design, function, and structure can vary.

A state rare disease legislative caucus is a collective group of state legislators which meet to pursue common rare disease legislative objectives. Caucuses can have a bipartisan and bicameral structure. Functions can include moving legislation, securing funding, and considering policies that affect the rare disease community.

Rare disease advisory council is a collective group of stakeholders from across the state who act as an informed advisory committee. Their functions can include advise and coordinate efforts to study and collect data on incidence of rare disease in state, raise public awareness on rare diseases in the state through publications, identify best practices for rare disease diagnosis and treatment, and advise specific state healthcare related boards. The structure and duties vary widely between states.