The RARE-X Corporate Advisory Council provides guidance, oversight and support for our mission, vision, activities, and programs. Council members are leading companies and organizations from industry, academia, data/technology, patient advocacy, health insurance and research.

RARE-X Mission

RARE-X is a 501(c)(3) patient advocacy organization, which believes that by enabling the gathering, structuring, and sharing of critical patient data at scale, and removing barriers to access and analysis, we can accelerate diagnosis, disease understanding, and future medicines development.

Member Organizations

The Council’s purpose is to support patient-owned data collection/data sharing, and ensure the development of infrastructure governance, guiding principles and output to meet the needs of all stakeholders. The Council will address critical challenges related to RARE-X programs and priorities. Members will offer perspectives and insights that contribute to our growing understanding of RARE-X communities and their priorities. 

• Meeting Participation
  • The Council will identify an annual focus area and explore pilots and outcomes in support of the defined project.
  • Members are encouraged to participate, bring forward ideas for consideration, and contribute to the broader mission of RARE-X.
  • Each meeting has a dedicated topic for discussion and presentation including a working session. Topics include:
    • Contracting to create a win-win for patient-generated/controlled data
    • Data governance for the long game – structuring governance and consent to support the sharing of research-ready data
    • Creating an interconnected data environment leveraging new technology
    • What we are learning: RARE-X patient Data collection portals / pilot outcomes / metadata
  • Members are encouraged to participate, bring forward ideas for consideration, and contribute to the broader mission of RARE-X.
  • The Council will identify an annual focus area and explore pilots & outcomes in support of the defined project

• Proposed Sub-Committees/topic areas of interest:
  • Consent and data governance
  • Patient-generated/owned data
    • Ensuring data quality
    • Data sharing agreements and language – patient owned data collection
  • Building regulatory compliant natural history data
  • Federated data sharing and  developing agreements to support data consortia
  • Diversity Equity and Inclusion projects
  • CGTX – non-proprietary registries and long term follow up
  • International data governance
  • Patient education: data governance, patients role in data collection and data sharing
  • Citizen science
  • Case-studies from RARE-X pilots
  • Developing health data “hacks”

• Meeting Schedule
  • Meetings 6x per year
  • January, March, May, July, September, November
  • Meetings will be one hour in length
  • Sub-committees will meet separately

For more information, please contact Nicole Boice via CONNECT WITH US