Learn – RARE University

Data DIY: Becoming A Data-Centric Community

Ready to enroll? Click the button to get started.


A strong data program is one of the most valuable assets a rare disease organization can possess. It provides a solid foundation for strategy development and decision making. It makes your organization attractive to funders, investors, and research partners. It can even reveal new solutions to seemingly unsolvable problems.

This module assembles stories of advocacy leaders who’ve used data-centric strategies to create new paradigms, breakthrough barriers and achieve remarkable progress – often in surprising ways.

Thank you to our developers!

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