2026 Federal Legislative Policy Priorities
All working groups utilize the federal legislative policy grid to organize and prioritize legislative matters. Any status changes or added policy priorities of the Congress will be updated in the grid and reviewed during a quarterly call.
For information on each of the bills in the lead, engage, and support categories, including contact information for external partners leading legislative efforts, check out our Legislative Priorities Reference Guide.
Lead
Policies that the RARE Foundation will initiate and drive. Activity may include crafting strategy, conducting direct lobbying activities, activating advocates to support, and more.
Engage
Policies that the RARE Foundation will proactively act on. Activity may include crafting comments, engaging Congress, sharing opportunities to provide input with advocates, and more.
Support
Policies led by existing entities, coalitions, or organizations that are relevant to the rare disease community. Activity may include amplifying efforts through sign-on letters, participation in joint meetings, and distribution of information.
Monitor
Policies that are relevant to the rare disease community. The RARE Foundation will actively consider proposals from Community Congress members or changes in the policy landscape that necessitate further consideration or action.
2026 State Policy Priorities
All working groups utilize the state legislative policy grid to organize and prioritize legislative matters. Any status changes or added policy priorities of the Congress will be updated in the grid and reviewed during a quarterly call.
For information on each of the bills in the lead, engage, and support categories, check out our State Policy Reference Guide.
