Rare Disease Advisory Council Legislation
The Rare Disease Advisory Council would coordinate resources, address health coverage issues and ensure that state-of-the-art information on rare disease education, treatment, and access to care is available to health care providers and patients.
This historic legislation is necessary to ensure that patients with a rare disease and their families have their many unmet needs addressed. We have waited too long. The time is now! Please ensure this legislation is passed by writing to your state’s legislators, submitting written testimony and testifying at the committee hearing.
Below is information by state. Please click below to read the bill filed in Rhode Island.
For questions or information, please contact the State Legislative Coordinator.
Rhode Island Legislative Coordinator