The Nonprofit Forum happens once a year and brings together diverse voices in the neurological disorder community. The Nonprofit Forum is attended by people with lived experience of neurological disorders, leaders of patient advocacy organizations, and staff at the National Institute of Neurological Disorders and Stroke (NINDS).
People who attend the Forum talk about research priorities for neurological disorders, learn more about the research already happening at NINDS, and build relationships with each other. The Nonprofit Forum is free to attend, and participants can attend in-person at the National Institutes of Health (NIH) or virtually. For people who miss the meeting, a video of the meeting is available on the Nonprofit Forum’s website.
Stage(s) of Research Process:
- Study Planning: When people attend the Nonprofit Forum, they get to make sure NIH and researchers understand what topics they think are most important. People who attend can also learn how to meet with researchers and start building better relationships with them. These relationships can lead to active partnerships where people work with researchers to design studies that ask the most important questions.
Who Might Benefit:
- Patients, Caregivers, and Patient Advocacy Organizations
- Can attend or participate in the Forum to tell the NIH what they think are the most important research questions about neurological disorders.
- Can watch videos of previous Nonprofit Forums online. The videos talk about research, research questions important for neurological disorders, and about how the NIH works.
- Can attend the Forum to talk with other patient advocacy organizations and learn good ways for achieving their goals. They can also learn these successful ways by watching the videos on the Nonprofit Forum website.
- Researchers and Research Administrative Leaders
- Can participate in the Forum to understand more about neurological disorders from people whose lives are affected by neurological disorders.
- Can use the Nonprofit Form as an example for how to create a space for researchers, patients, and patient advocates to work together.
Key Takeaways and Examples in Practice:
- The topics included in the Nonprofit Forum should be chosen by a group of people that include nonprofit organization staff, researchers, and people with lived experience. This makes sure that the information is relevant to everyone who attends the Forum.
- Use feedback from participants to inform program content in future years.
- It is important that meetings like this have an option for people to attend online. This makes it easier for people who cannot travel to learn and participate.
- The videos available online are useful to people who work at patient advocacy organizations, and they share them with others.
This work was done with the direct support by each of the following partners who advance this work:
- The Nonprofit Forum planning committee of patient advocacy organizations and NINDS staff (the planning committee members change every year to make sure there is equal opportunity for participation across different patient advocacy organizations)
- NINDS’s partnership with the patient advocacy community
Keywords: Sustainable Engagement & Capacity Building; Patients, Caregivers, and Patient Advocacy Groups
Links to Relevant Resources: