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Chan et al. Rare Dis Orphan Drugs J 2023;2:28 Rare Disease and
DOI: 10.20517/rdodj.2023.23
Orphan Drugs Journal

Review Open Access

The international rare disease research consortium
(IRDiRC): making rare disease research efforts more

efficient and collaborative around the world

2
Chun-Hung Chan 1 , Samantha Parker , David A. Pearce 1,3,4
1
Sanford Research, Sioux Falls, SD 57104, USA.
2
Innoskel, BioParc, Biot 06410, France.
3
Sanford Health, Sioux Falls, SD 57104, USA.
4
Sanford School of Medicine, Sioux Falls, SD 57105, USA.
Correspondence to: Dr. David A. Pearce, Sanford Health, 2301 E 60th Street N, Sioux Falls, SD 57105, USA. E-mail:
david.pearce@sanfordhealth.org
How to cite this article: Chan CH, Parker S, Pearce DA. The international rare disease research consortium (IRDiRC): making
rare disease research efforts more efficient and collaborative around the world. Rare Dis Orphan Drugs J 2023;2:28.
https://dx. doi.org/10.20517/rdodj.2023.23

Received: 26 Jul 2023 First Decision: 10 Nov 2023 Revised: 20 Nov 2023 Accepted: 28 Nov 2023 Published: 14 Dec 2023

Academic Editor: Daniel Scherman Copy Editor: Dan Zhang Production Editor: Dan Zhang

Abstract
The International Rare Disease Research Consortium, or IRDiRC, is a global consortium of key stakeholders from
different facets of rare disease research that together seek to drive advances in diagnostics, therapeutics, and
patient outcomes. The consortium facilitates a global and cross-disciplinary exchange of ideas to tackle key issues
in rare diseases through the development of recommendations, data standards, tools, and guidelines that
harmonize research efforts and improve efficiency. While IRDiRC has made significant contributions to the
development of new therapies and diagnostics since its establishment in 2011, much work remains to alleviate the
burden of rare diseases. The consortium has demonstrated its success in providing a global platform to advance
rare disease research through collaborative efforts worldwide and continues to identify and address barriers to
health equity for all rare disease patients.

Keywords: Rare Disease, patient advocates, orphan drug, clinical research

© The Author(s) 2023. Open Access This article is licensed under a Creative Commons Attribution 4.0
International License (https://creativecommons.org/licenses/by/4.0/), which permits unrestricted use, sharing,
adaptation, distribution and reproduction in any medium or format, for any purpose, even commercially, as
long as you give appropriate credit to the original author(s) and the source, provide a link to the Creative Commons license, and
indicate if changes were made.

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