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The Foundation has launched three initiatives led by Steering Committees of leading experts in the fields of health economics, public policy, communications, market access, manufacturing, precision medicine, and patient advocacy.

These Three programs are:

Gene Medicine Education

This multi-year program began in 2018 with extensive market research on public and patient/caregiver perceptions and attitudes about gene medicine. It will provide the public with accurate, jargon-free information about the science, benefits, limitations, and possible risks of therapeutic gene medicine technology.  What’s more, this program will support news and social media influencers as they cover gene medicine in a more balanced way with less emphasis on the sensational.

Planned program activities and content include:

  • Compelling, clear illustrations that summarize the science
  • Science briefings for journalists and policymakers
  • Fact sheets and information kits for patient advocacy groups and medical societies
  • Social media campaign on the value of gene medicine
  • Public service announcements
  • Speaking engagements and calls to participate in conferences and events

Economic Impact

The Foundation will conduct research that provides in-depth analyses of the impact of regenerative medicines on national and international healthcare economies. It also is planning to do a pharmaco-economic analysis using advanced economic simulation models of regenerative medicines in several major disease areas to quantify the value of curative therapies compared to the current standard of care.

Click here for the Analysis.

Infrastructure

This research project will identify and prioritize the infrastructure, logistics and healthcare system requirements essential to support widespread adoption of these transformative medicines.  It will explore in depth the components of these therapeutic platforms and how they could leverage manufacturing breakthroughs while integrating technologies such as next-generation sequencing and other precision medicine tools in imaging and healthcare IT.