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 Massachusetts.


For questions or information, please contact the State Legislative Coordinator.

Massachusetts Legislative Coordinator 

Patricia Weltin


Please use the link below to find your Massachusetts State Legislator and contact information: 

Please join RDUF’s Massachusetts Rare Disease Community Facebook group for updates on the bill. 


If you would like to make a difference for yourself or someone you know who is living rare, please fill out the form below and let us know how you want to create change for rare! Help give rare a voice!