Heading in to election season, it’s important that the rare disease community’s voice is heard at the state and federal levels. To ensure our continued success, RDLA has put together a collection of resources to help advocates register to vote, know where their representatives stand on rare disease-related issues, and know about ballot initiatives that could affect the rare disease community.
- Vote411.org – This non-partisan site finds voter requirements for your state and helps you get registered.
- RDLA’s Legislative Scorecards – These scorecards list the voting record of your Members of Congress, offering a cumulative grade based on their support of recent federal legislation. If your representative doesn’t have a great track record on rare disease issues, In-District Lobby Days takes place from July 31st – September 4th, giving you a chance to speak with your legislator’s local office and encourage them to better support issues affecting rare disease patients.
- Rare Disease Congressional Caucus – A great way to tell if your representatives support the rare disease community is to see if they’re a member of the Rare Disease Congressional Caucus. The caucus convenes quarterly to inform Congressional offices about issues affecting rare disease patients.
- RARE on the Road – A partnership between the EveryLife Foundation and Global Genes, this tour of leadership events offers education on legislation currently being considered by Congress and an opportunity to meet other rare disease advocates in your local area. For those looking to move the needle on rare disease legislation or get an idea of how their representatives will vote on upcoming issues, RARE on the Road is a must-attend. Events will be hosted in Houston, Salt Lake City and Nashville this summer. For more information and to register, visit the RARE on the Road website.
- USA.gov – Hosts information on elections for state and local officials. Don’t know where your state representatives stand on rare disease issues? Check to see if your state has a rare disease caucus, or call your state representative’s office and ask for their stance on legislation affecting rare disease patients. RDLA provides tools to help advocates find the contact information for most of their elected officials.
- NORD State-by-State Report Cards – The National Organization for Rare Disorders (NORD) has comprised this useful guide offering state-by-state insights on medical food coverage, newborn screening, Medicaid elegibility and other issues that affect rare disease patients and their families.
- Ballot Inititatives – Based on your location, there may be local ballot initiatives that could affect the rare disease patient in your life. Ballotpedia provides neutral analysis of ballot initiatives at the state and local level so voters step in to the booth with the most information possible.
Notice a valuable voter resource that’s missing? Email Grant Kerber at firstname.lastname@example.org and we’ll add it to this page. Let’s make a difference in 2018!