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Home > 2021 Rare Drug Development Symposium > Critical Considerations Collaborating with Patients/Patient Advocacy Groups
Critical Considerations Collaborating with Patients/Patient Advocacy Groups
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*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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