In September 2023, the International Neuropalliative Care Society (INPCS) convened a panel of seven leading neurology non-profit organizations* to discuss their approaches to palliative care. The discussion highlighted both the significant challenges shared across organizations and the tremendous opportunities that could be realized through collaboration (click here to access video of the session).

Inspired by the enthusiasm and common purpose that emerged from that conversation, INPCS launched a working group to continue the dialogue. Those efforts culminated in the formation of the NeuroPalliative NonProfit Collaborative (NPNPC) in September 2025. The Collaborative initially focused on three priorities:

• Expanding the Collaborative to include additional non-profit organizations, particularly from illnesses or regions not represented
• Developing a white paper to serve as a call to action for the broader community
• Identifying palliative care resources available within the Collaborative

We are proud to report meaningful progress on all three goals.

Today, the Collaborative includes more than 40 neurology and palliative care nonprofits from around the world that support increased partnership and knowledge-sharing to advance neuropalliative care. A growing directory of participating organizations is available here.

The Collaborative has also compiled a collection of neuropalliative care resources from across member organizations. Designed for patients, families, clinicians, researchers, and advocates, this resource hub highlights existing tools while fostering the exchange of ideas and best practices throughout the nonprofit community. 

Finally, the Collaborative has published a white paper in The Lancet Neurology outlining key priorities and opportunities for advancing neuropalliative care worldwide and serving as a call to action for the field.

While we are proud of what has been accomplished so far, this is only the beginning. We welcome additional nonprofit organizations interested in supporting this work. If your organization would like to join the Collaborative or endorse our action plan, we would be delighted to hear from you. Please click here to contact the NPNPC.

*We thank the ALS Association, American Heart Association/American Stroke Association, CurePSP, the Davis Phinney Foundation, the Lewy Body Dementia Association, the National Brain Tumor Society, and The Parkinson's Foundation for participating in the 2023 INPCS nonprofit roundtable.