Rare Disease’s Additional Responsibility

MAIN STAGE | ESSEX CENTER/SOUTH

Once you know the statistics on rare disease, it’s natural to want to be a part of the solution. One in 10 Americans has a rare disease, but only 5% of rare diseases have a treatment. It takes a completely different approach:

  • Targeting: You need to fully appreciate how you are going to find and reach your audience, allowing for both highly targeted and much broader approaches.
  • Content: Your audience is more highly motivated, so it’s more important than ever to not overpromise, to deliver on expectations, and to support that audience. It’s also crucial to appreciate that patients and caregivers will often need to educate their HCPs or learn how to get care other ways.
  • Tactic breadth and depth: There’s a responsibility to invest, building a community and providing disease education (if it doesn’t exist elsewhere to a high quality).