Building A Biobank Consortium:
Using Shared Infrastructure to Advance Discovery in Rare Diseases

Reception on the evening of February 24. Full day meeting will be February 25.
If you did not receive an invitation for this meeting, please email Sharon Terry at

Register Here

         Together with Sanofi, we are planning a one and a half day meeting to discuss the formation of a consortium based, biobanking platform. The major tenant of such an approach is to enable increased access to unique patient and tissue samples to facilitate therapeutic development for patients with rare diseases. The basic infrastructure and methods of stewardship should be shared (minimize duplication and waste), and the resources employed should be used for recruitment of disease-specific samples, and strengthening communities of trust as stewards of the consortium collection.

Current Research and Discovery Challenges:

  • Access to sufficient, well documented patient samples
  • Establishing costly agreements with many different institutions
  • Need to accommodate many levels of bureaucracy and oversight
  • Limited access to well characterized, rare disease patient samples

Future Desired Outcomes:

  • Better understanding of the needs of participant organizations
    • Companies and patient advocacy organizations

  • Collaboration toward shared outcomes and decisions
    • Basic and advanced templates and patient consent forms
    • Shared process review and structures

  • Creation of a BioBank consortium
    • Meet existing needs and plan for future opportunities

  • Plans for implementation
    • Funding, timelines, and scope

Who Should Attend?

Patient organizations, academics, government institutes, and life science companies who wish to establish a consortium to build a biorepository to store human patient samples in order to accelerate translational, rare disease research. Those participants interested in developing a shared infrastructure solution, employing best common practices, and obtaining access to the joint resource for accelerating therapeutic discovery are strongly encouraged to attend.


The workshop will briefly articulate the opportunities and challenges, offer the perspective of experts on key topics, and spend the majority of the time in true workshop form: creating the basic elements of a consortium and working together as pioneers to establish a unique, dynamic, and responsive resource.