State Advocacy

Current Legislative Issues and News

The ALS Association, MA Chapter Supports Legislation to Create Rare Disease Advisory Council – The ALS MA Chapter, with over 25 patient advocacy groups, joined a letter of support for House Bill 4268 (H.4268), legislation that would create a rare disease advisory council (RDAC), which provides elected officials and other state leaders on rare disease research, beneficiary access to treatments, and best practices for the care of those persons with rare diseases, including ALS. Creating an RDAC in Massachusetts will give rare disease patients a unified voice in Massachusetts state government. It will also be tasked with creating a rare disease plan for the state and developing methods to publicize the profile of the social and economic burden of rare diseases to ensure health care providers are informed.

2020 Public Policy Priorities
Our federal advocacy work focuses on educating and mobilizing all members of Congress in a nonpartisan fashion to achieve the mission of The ALS Association.
State Advocacy