Critical Considerations Collaborating with Patients/Patient Advocacy Groups

*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