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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