Governance Board (Directors)

a group of consortium members who define in writing the limits on the operational means and monitors previously created policies.

*Consortium Researchers / Members

scientists who are actively involved in IRC5 research endeavours & participate in at least one working group. Includes:

  • All Directors
  • Scientific contributors and collaborators of the IRC5 who are not currently on the Governance Board  (these individuals have no voting rights in the Corporation)


professionals who contribute to database but are not involved in setting the research direction or governance of IRC5.  Includes:

  • Laboratory personnel of IRC5 members
  • Study coordinators of laboratories represented in IRC5
  • Clinicians who contribute data

*External Advisory Board

a group of individuals who provide professional assistance and advice for organizational and scientific pursuits of IRC5.  Includes 3 committees:

  • Scientific Advisory Committee – Expert scientists not members of IRC5
  • Consumer Advisory Committee – Includes people from areas of clinical and professional care of effected individuals, patient groups and industry partners.  A representative from each family organization.
  • Fundraising Committee – Individuals with professional expertise relevant to functions of the organization

*Friends of IRC5

individuals and organizations who offer support to IRC5 (financial and otherwise).  The following family support organizations are invited to maintain a representative on the Consumer Advisory Committee:  AusDoCCCorpalNODCC.

  • These groups are under development.