Intellectual Property: Balancing Stakeholders’ Rights – 2023 RARE Drug Development Symposium

In May 2023, Global Genes and the Orphan Disease Center of the University of Pennsylvania hosted the RARE Drug Development Symposium. The founder of the University of Pennsylvania’s Orphan Disease Center outlines key concepts that advocates should be familiar with when negotiating contracts with industry and academic partners. 

Notable quotes from this session:

The bear market caused a retreat from investment in rare disease. What we need now is very positive data and a way to help industry move forward.

The most exciting science may not translate to the most patentable or valuable intellectual property.

Key Takeaways:

• There is  no “standard” IP protection but patients have a role to play in deciding what gets patented, by whom, and therefore a say in who can access knowledge, data, processes or materials.
• Consider what is being licensed (patients, knowledge, data, materials) and the licensing terms (exclusive vs. non-exclusive, reserved rights/non-competes, rights to next generation inventions and grounds for terminating the license).
• Decrease the cost of development by partnering with health authorities in a productive way to help them understand your needs and by leveraging the power of platforms.

Jim Wilson, MD, PhD
Director, Orphan Disease Center, University of Pennsylvania