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.
Meagan Cross FASTAustralia Chairperson, Project Manager, and International Liaison Global Angelman Syndrome RegistryAllyson BerentChief Science Officer Foundation for Angelman Syndrome TherapeuticsKristin SmedleyChief Executive Officer Curing Retinal Blindness FoundationMileva Repasky, MSChief Patient & Development Officer Castleman Disease Collaborative NetworkMary Zuccato, MBAChief 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, MHAProgram Officer, National Center for Advancing Translational Sciences National Institutes of HealthDavid Fajgenbaum,MD, MBA, Sc, FCPPCo-founder & Executive Director Castleman Disease Collaborative NetworkF. Bradley Johnson,MD, PhDProfessor of Pathology and Laboratory Medicine University of Pennsylvania Perelman School of MedicineBenjamin Prosser, PhDAssistant Professor of Physiology University of Pennsylvania Perelman School of Medicine Edwin Weeber, PhDFormer Professor of Molecular Pharmacology and Physiology University of South FloridaLiz Horn, PhD, MBIPrincipal LHC BiosolutionsPaula Evans Board Chair Foundation for Angelman Syndrome Therapeutics (FAST) Chief Executive Officer, GeneTx
