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Peripheral Neuropathy Advocacy

Our Advocacy Work on The Hill

In 2020, the peripheral neuropathy (PN) research community achieved a huge breakthrough. For the first time, Congress included “peripheral neuropathy” as an eligible condition for study in the Department of Defense’s (DoD) Peer Reviewed Medical Research Program (PRMRP). This secured more than $8 million in grants for peripheral neuropathy research in fiscal year 2021. Our ongoing peripheral neuropathy advocacy efforts led to the condition’s renewal for fiscal years 2022 and 2023 as part of the annual Defense Appropriations Act, which Congress approved.

In 2023, we will continue our work to preserve this designation, since it doesn’t automatically renew. (At least one U.S. senator must to submit the request annually). We’re also engaging in a new strategy to raise awareness of PN and increase research funding with the NIH. NIH spends approximately $210 million on peripheral neuropathy[1], a small amount of their annual $45 billion budget.

Expanding our Peripheral Neuropathy Advocacy Efforts in 2023

Most NIH research on PN is funded by the NIH’s National Institute of Neurological Disorders and Stroke (NINDS). We’ll be working with NINDS to secure the involvement of other related institutes and centers at NIH. For example, because of the correlation between cancer chemotherapy or diabetes and peripheral neuropathy, we will be seeking new relationships with the National Cancer Institute (NCI) and the National Institute of Diabetes and Digestive and Kidney Disorders (NIDDK).

We’re also hoping to develop an NIH-led interagency work group involving these institutes, as well as officials from DoD and the Veterans Administration. This group aims to develop a comprehensive federal plan to better understand the causes of PN and develop new treatments. Lastly, we’re working with Congress and the NIH to develop a new Idiopathic Neuropathy Center of Excellence program. This program will create academic research centers devoted to better understanding the causes of and finding potential new treatments for idiopathic neuropathy.

All of these efforts will involve advocacy work with the NIH and Congress. We will share updates as we make progress throughout the year. Don’t miss a single update, sign up for our monthly enews.


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