Exchange Forum

The Exchange Summit Supports Patient Organizations And Advocates With Insights, Introductions And Next Steps In Their Research Driving Journey.

Keynote and Panel Discussion Recordings from the 2022 Exchange - A Patient Innovator Forum

RARE-X Exchange – Opening Keynote: When Rare Disease Becomes a BIG Data Opportunity

RARE-X Exchange – Can Big Data Supercharge Research for 10K Rare Diseases?

RARE-X Exchange – RARE-X – Leveraging What’s Ahead

RARE-X Exchange – The Future is Now: Realizing the Possibilities of Patient
Driven Research

RARE-X Exchange – N-of-1 Therapies – The Promise and Opportunity

RARE-X Exchange – RARE-X Open Science Data Challenge – Neuro + Case Study: ALS
Kaggle Challenge

RARE-X Exchange – Case Study: Collaborative Research Network Commission for Complex Copy Number Variants

RARE-X Exchange – Built to Accelerate – disease characterization, progression models and research roadmapping

RARE-X hosted its inaugural Exchange Forum in San Diego, CA, September 14th-15th, 2022. The Exchange Forum supported patient organizations and advocates with insights, introductions, and next steps in their research-driving journey.

  • Attendees heard from RARE-X leadership with progress reports and updates on technology, the research portal, key partnerships, scientific insights, and the platform road map. 
  • Attendees learned about innovations and opportunities in treatments [including Cell & Gene Therapy] and technology that could impact future disease community research.
  • Attendees met with other community leaders, benefit from shared best practices, and learn about early research activities that are leading to measurable outcomes,

RARE-X Patient Advocate Partner Organizations had the opportunity to send two representatives from each organization to attend.

There was no cost to attend the Exchange Forum. 

The Exchange Forum will return next year.  Stay tuned for details and sign up for RARE-X emails below.

Questions, please email


N Lorem Foundation
Translate »