Fireside Chat: Keeping patients and caregivers at the center of rare disease clinical trials: collaborating with patients, caregivers, and nonprofits for better outcomes

  • Understanding the provider-patient conversations: point-of-patient and provider discussions to shape trial design that is patient centric
  • Survey design: creating questions focused on patient and caregiver needs during the trial and post-trial to keep patients engaged and enrolled leading to better outcomes
  • Share your Rare Action: mention your post-session action to improve your process that includes rare patients, caregivers, and non-profits