BENEFIT Act of 2023

Please join other ALS advocates in helping pass the BENEFIT Act!

The BENEFIT Act (S.526/H.R.1092) can improve the FDA’s therapy approval process by making their process more transparent.

During the Food and Drug Administration (FDA) approval process, the FDA weighs a therapy’s risks and benefits to decide whether the therapy should be made available. Currently, the FDA does not have to disclose how or if they use patient experience data during the drug approval process. The BENEFIT ACT changes this and provides transparency to the process by requiring the FDA to share if and how they utilize the patient reported data.

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Join us for the 2024 Community Summit!

Join us in Washington DC from May 29th - June 2nd for the 3rd annual ALS Awareness Month flag display and inaugural Community Summit.

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