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IRDiRC does not receive funding from its members, nor does IRDiRC provide funding for research.

Partnering on common goals
The Consortium recognizes that it cannot meet its goals by working alone. Therefore, IRDiRC partners with
other organizations with like-minded goals in order to combine resources and expertise to drive innovation,
and make impactful changes to the lives of those living with a RD.

IRDiRC is funded through the European Joint Programme on Rare Disease (EJP-RD), with significant
overlap between IRDiRC’s membership and the partner organizations of the EJP-RD. Similar to IRDiRC’s
[10]
focus on three central goals, the EJP-RD organizes its work around five central “Pillars” . Under Pillar 1
Fundings and Calls, the EJP-RD encourages members to support the objectives of IRDiRC and implement
its policy recommendations, and develops transnational calls targeting topics of importance identified by
IRDiRC. Pillar 2 Coordinated Access to Data and Services aligns closely with the goals of IRDiRC:(1) All
patients coming to medical attention with a suspected rare disease will be diagnosed within one year if their
disorder is known in the medical literature; all currently undiagnosable individuals will enter a globally
coordinated diagnostic and research pipeline; (2) 1,000 new therapies for rare diseases will be approved, the
majority of which will focus on diseases without approved options. IRDiRC’s activities are not specifically
targeted at education and training, yet they contribute indirectly to Pillar 3 Training and Empowerment
through the development of best practices, tools, data standards, and policy/regulatory frameworks. Finally,
Pillar 4 Innovation and Clinical Trials embodies a central theme of IRDiRC’s work, which is to identify
opportunities to apply cutting-edge techniques and knowledge in RD research, diagnostics and therapeutic
development, and create a framework to support clinical trials to test the efficacy of new therapies.

Since 2020, IRDiRC has partnered with the BLACKSWAN Foundation and the EJP-RD to host a joint
RE(ACT)-IRDiRC Conference that brings together scientific experts to present and discuss cutting-edge
work related to RD research and development. Previously, the BLACKSWAN Foundation and IRDiRC held
separate events but recognized the benefits of combining their efforts to maximize the impact of this
conference as they worked towards common goals. The joint RE(ACT)-IRDiRC conference was hosted
virtually in January 2021 due to the ongoing COVID-19 pandemic, while the 2023 edition took place as an
in-person event in Berlin, scheduled back-to-back with IRDiRC’s CA meeting to maximize attendance.

Building upon the work of the Clinical Research Networks for Rare Diseases TF, IRDiRC partnered with the
EJP-RD to host a conference on clinical research networks (CRN) in December 2022 featuring a roster of
international experts to share knowledge on CRN structure and activities, while stimulating discussion and
collaboration on pathways towards interoperability between networks. This meeting was scheduled back-to-
back with the IRDiRC CA meeting to encourage key stakeholders in all rare disease fields (scientists,
funders, patient advocates) to participate in a more robust discussion.

The European Rare Disease Research Coordination and Support Action (ERICA) consortium, comprised of
all 24 European Reference Networks (ERN), was established to expand upon the work of the individual
ERNs to create a platform to tackle highly complex or rare disease cases with specialists from different
countries and specialties. The work of ERICA supports the 1st goal of IRDiRC to ensure that all patients
receive a diagnosis within 1 year of coming to medical attention, or are entered into a global diagnostic and
research pipeline. As such, IRDiRC is actively involved in the governance of the ERICA consortium through
its representation on the ERICA advisory board by the Chair of the IRDiRC CA.