How Can Patients and Advocates Help Accelerate Drug Development?

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Davelyn Hood, MD, Joshua Mann, MPH, and Jessica Bohonowych, Ph.D. discuss the importance of data sharing to rare disease research and drug development.
  1. National Organization for Rare Disorders (NORD)
  2. nord
  3. national organization for rare disorders
  4. rare diseases
  5. rare
  6. rare disease
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I'm interested in what advocates can DO more directly and proactively to make an impact. Do you have tips for learning which of our physicians impact pharma development? So we know where to share our stories?
Do you have tips for how to share your unsolvable problem in a way that doesn't leave clinicians feeling helpless but motivated to help? (I made a PPT on this).
Are there barriers at the federal vs state levels for clinical trials you can educate us about? Is there a need for rare pharma advocacy the average rare person can fulfill and feel like the spoons mattered?
Research clinics I follow do well. Are you advocating a change of research venue?

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