Data DIY: Developing Collaborative Research Networks

Developing treatment for rare diseases is always a team effort. As an advocacy leader, you have an essential role to play in convening this team. In this module, you’ll meet Dr. David Fajgenbaum and learn about the 8-Step Collaborative Research Network he created to advance treatment for Castleman Disease.

Next, you’ll draft an action plan that will enable you to generate interest among clinicians and researchers, and grow and manage your scientific network. By the end of this module you will be able to; identify the 8-steps in the CDCN’s Collaborative Network Model, describe the process you will use to locate and connect to researchers, and create a plan for organizing and leading your research network.

Cost: Free
Instruction Type: Self-Paced
Certificate: Yes

Thank you to our content developers!

Meagan Cross FAST Australia Chairperson, Project Manager, and International Liaison Global Angelman Syndrome Registry
Allyson Berent    Chief Science Officer Foundation for Angelman Syndrome Therapeutics
Kristin Smedley Chief Executive Officer Curing Retinal Blindness Foundation
Mileva Repasky, MS Chief Patient & Development Officer Castleman Disease Collaborative Network
Mary Zuccato, MBA Chief Operating Officer Castleman Disease Collaborative Network                                                                                              
Stephen C. Groft, PharmD Senior Advisor to the Director, Office of the Director, National Center for Advancing Translational Sciences National Institutes of Health  
Eric Sid, MD, MHA Program Officer, National Center for Advancing Translational Sciences National Institutes of Health
David Fajgenbaum, MD, MBA, Sc, FCPP Co-founder & Executive Director Castleman Disease Collaborative Network
F. Bradley Johnson, MD, PhD Professor of Pathology and Laboratory Medicine University of Pennsylvania Perelman School of Medicine
Benjamin Prosser, PhD Assistant Professor of Physiology University of Pennsylvania Perelman School of Medicine                                                                                                    
Edwin Weeber, PhD Former Professor of Molecular Pharmacology and Physiology University of South Florida
Liz Horn, PhD, MBI Principal LHC Biosolutions
Paula Evans Board Chair Foundation for Angelman Syndrome Therapeutics (FAST) Chief Executive Officer, GeneTx