Rare Disease Legislative Advocates compiled its scorecard based on membership in the Rare Disease Congressional Caucus and action taken on legislation important to the rare disease community in the 116th Congress.
The rare disease community followed many bills that are not on this list. In addition, legislators may have taken action in different ways which are not captured on this scorecard. Chairs of Committees and Members in leadership positions, generally do not cosponsor bills. This scorecard can be used to provide insight on legislators’ records on rare diseases, but is not intended to be a comprehensive indicator of rare disease impact.
View the printable State Specific Congressional Scorecards from the 116th Congress
Click here for an explainer on the bills and actions scored.
How to Use the Scorecard:
- Have a conversation about rare disease issues with your legislator and include the Scorecard.
- If your legislator has a strong record on rare diseases, be sure to thank them publicly. They deserve the recognition.
- If your legislator’s record is weak, ask them why. Members will often try to find ways to help a constituent.
- Evaluate the conversation and follow-up. Is there a commitment for an improved level of support for rare disease issues? If so, keep in touch with their office and nurture the relationship.