Growing Stronger attends Rare Drug Development Symposium


Earlier this month, Growing Stronger attended the Rare Drug Development Symposium hosted by Global Genes and the Orphan Disease Center of the University of Pennsylvania.


This event equipped advocates with the knowledge, skills and connections needed to advance therapy development for their communities. This year, the focus was collaboration – the foundation of success in rare disease research.

Sessions included:

Charting the Path to Treatments

Rare Research Roadmap

Understanding Data for Basic Research

New Technologies in Early Stage Research 

Intellectual Property: Balancing Stakeholder Rights

The Regulatory Landscape: Pathways, End Points, and Clinical Trials

Research Readiness

How Can the FDA Improve Process?


As a parent-founded patient organization, we benefited greatly from attending this event from both a parent perspective and as an organization. Moving forward, we are taking what we learned and applying it to Growing Stronger and our community as a whole.