A summit for rare disease awareness and collaboration in the Great Plains.
Official title: Great Plains Rare Disease Summit
Funded at Sanford Research/usd · NIH-10819203 · Data updated 2026-11-12
This study is all about bringing together patients, advocates, and researchers at the Great Plains Rare Disease Summit to share knowledge and support for rare diseases, helping everyone learn more about their conditions and how to advocate for themselves.
Quick facts
| Grant type | NIH-funded research |
|---|---|
| Study type | NIH-funded research |
| Funding institution | Sanford Research/usd NIH-funded |
| Lab location | 1 site (Sioux Falls, United States) |
| Project start | April 1, 2020 |
| Project end | March 31, 2026 |
| Funding year | 2024 |
| Award (this year) | $1 |
| NIH project number | 5R13TR002724-05 |
| Project ID | NIH-10819203 on NIH RePORTER |
Who could benefit from this research
✓Could help
Ideal candidates for participation include individuals affected by rare diseases, their families, and patient advocates.
✕Less likely to help
Patients with common diseases or those outside the age range of 0-21 may not receive direct benefits from this research.
What this research studies
This research focuses on organizing the Great Plains Rare Disease Summit, which aims to connect patients, advocates, and researchers to improve understanding and support for rare diseases. The summit will feature presentations and discussions that facilitate communication between the research community and those affected by rare diseases. By bringing together diverse stakeholders, the event seeks to enhance patient advocacy and provide access to the latest scientific and clinical research. Participants will gain valuable insights into their conditions and learn how to effectively advocate for themselves and their communities.
Why it matters
Potential benefit: If successful, this research could empower patients with rare diseases by improving their access to information and support networks.
How similar studies have gone: Previous similar initiatives have shown success in fostering collaboration and improving outcomes for rare disease communities.
Where this research is happening
-
Sanford Research/usd
Sioux Falls, United States Active
Researchers
- Principal investigator: Weimer, Jill M — Sanford Research/usd
- Study coordinator: Weimer, Jill M
About this research
- This is an active NIH-funded research project — typically early-stage science, not a clinical trial accepting patient enrollment.
- Some NIH-funded labs run parallel clinical studies or seek volunteers for related work. To check, contact the principal investigator or institution listed above.
- For full project details, budget, and progress reports, visit the official NIH RePORTER page.