Learn – RARE University

Data DIY: Developing Collaborative Research Networks

Ready to enroll? Click the button to get started.

Enroll

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.

Thank you to our developers!

Allyson Berent – Chief Science Officer Foundation for Angelman Syndrome Therapeutics
Meagan Cross – FAST Australia Chairperson, Project Manager, and International Liaison Global Angelman Syndrome Registry
David-Fajgenbaum
David Fajgenbaum, MD, MBA, Sc, FCPP – Co-founder & Executive Director, 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
Kristin Smedley – Chief Executive Officer, Curing Retinal Blindness Foundation
Mileva Repasky, MS – Chief Patient & Development Officer, Castleman Disease Collaborative Network
Eric Sid, MD, MHA – Program Officer, National Center for Advancing Translational Sciences, National Institutes of Health
Mary Zuccato, MBA – Chief Operating Officer, Castleman Disease Collaborative Network

On behalf of Global Genes and everyone who has helped to create this course, we welcome you and wish you a great learning experience.

We hope to inspire and empower you to realize your potential for driving progress in rare disease!

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

Explore other RARE University courses

Understanding Drug Development
Genetics Concepts for Rare Disease Patients & Families
Data DIY: Data Trusts, Governance, and Collection Platforms
Data DIY: The Why’s and How’s of Data Collection
Data DIY: Becoming a Data-Centric Community