IVI is moving from guidance to practice by developing training, co-learning, and implementation resources that will help patients, caregivers, advocates, and researchers work as equal partners in rare disease research.

This phase builds on IVI’s Rare Disease Patient Engagement Guidance and Checklist, and will help researchers, educators, and patient communities put that guidance into practice.

The project will bring together patients, caregivers, advocates, researchers, students, and other stakeholders to identify needs, learn from one another, and develop practical resources for patient-centered rare disease research.

Project Activities

  • Expand the multi-stakeholder Rare Disease Advisory Board to include new members whose expertise align with the goals of this phase
  • Review current patient engagement practices in rare disease research
  • Develop training modules, case examples, and implementation resources
  • Convene two co-learning workshops with researchers, educators, students, patients, caregivers, and other stakeholders
  • Create publicly available tools and educational resources

Expected Resources

  • Practical training and implementation resources
  • Case examples of rare disease patient engagement in practice
  • Co-learning workshops and summaries
  • Public training webpage
  • RDPE Training Toolkit

Together, these resources will strengthen patient-researcher partnerships and support research that better reflects the experiences, priorities, and outcomes that matter to people living with rare diseases and their families.

Phase III was supported by a Eugene Washington PCORI® Engagement Award (#EACB-49240).

EXPLORE RDPE GUIDANCE AND CHECKLIST