None--at least not in the USA. Unless they have an attorney in the family, the only way for PALS to get legal help is by being represented as a group. Consumer Watchdog is working on this issue. They did a great job getting improvements in staffing levels for mental health and autism, and hopefully they can get similar results for PALS. But ALSA also needs to make this an advocacy priority.
In my opinion, ALSA's advocacy priorities should include (1) improving home health care, and (2) coordinating the creation of ALS-specific clinical standards for provision of DME, and then advocating for enforcement of those standards.
For just a fraction of what ALSA spends on drug research, they could vastly improve the lives of P/CALS by adopting these advocacy priorities.
