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Chan et al. Rare Dis Orphan Drugs J 2023;2:28 https://dx.doi.org/10.20517/rdodj.2023.23 Page 7 of 8

ability to attend in person. Today, most IRDiRC activities are conducted online via videoconference,
including monthly meetings of the Operating, Constituent, and Scientific Committees, as well as TFs/WGs.
The Consortium Assembly meets quarterly with two in-person and two virtual meetings, and regular
updates from the Scientific Secretariat as necessary throughout the year. This regular cadence of meetings
ensures efficient discussion and communication of IRDiRC goals and priorities amongst all members,
allowing the Consortium to operate successfully on a global scale.

Evolving priorities
[14]
The Consortium was launched in 2011 with the support of five public funders , but it was soon recognized
that successful collaboration would require interaction with other key stakeholders in RDs, such as patient
advocates and industry. By the end of 2011, three patient advocate groups had committed to participation,
with companies/industries joining the following year. The interaction between these three key stakeholder
groups has been essential to the success of IRDiRC.

Originally, three Scientific Committees, the DSC, ISC, and TSC, were formed to advise the CA on research
priorities and provide updates on progress from a scientific viewpoint. While this proved very successful for
the first decade of IRDiRC’s existence, it was recognized that additional expertise was needed to support
efforts in new therapy development. Thus, the Regulatory Science Committee (RSC) was formed in 2022 to
address the growing need to develop tools and standards for navigating the myriad of regulatory
requirements across the globe, and to offer recommendations on harmonizing these differing requirements
into a single standard to reduce the regulatory burden on drug developers.

CONCLUSION
With IRDiRC a little over half-way through its current 10-year goals (2017-2027), much work is still
required to address the many challenges faced by RD patients and their families. While much progress has
been made towards achieving the three goals set in 2017, IRDiRC recognizes the continued need to engage
with stakeholders and foster collaboration on a global scale. With this in mind, IRDiRC continues to solicit
new membership from funders, patient advocates, and in particular, industry in an effort to further expand
the influence and impact of the Consortium on RD research.

DECLARATIONS
Author’s contributions
Manuscript preparation: Chan CH, Parker S, Pearce DA

Availability of data and materials
Not applicable.

Financial support and sponsorship
None.

Conflicts of interest
All authors declared that there are no conflicts of interest.

Ethical approval and consent to participate
Not applicable.