Critical Considerations Collaborating with Patients/Patient Advocacy Groups

June 24, 2021

*Recommended for Young Investigators/Researchers


Understanding Partnerships with Patients, Caregivers and Advocates in Rare Disease Research

  • What are the ways in which patients and advocates work differently and/or more closely with researchers?
  • How can you best work with a community or patient population as a researcher and be a good partner to them and how can you build trust?


The Value of Collaborating with Patients Communities in Research

  • Collaborations as a value driver for researchers in overall research, funding, and disease understanding
  • Opportunities to address gaps in understanding between patients, advocates and researchers
  • Improving communication between patients, advocates and researchers and developing culturally competent education materials


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