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Jonker et al. Rare Dis Orphan Drugs J 2024;3:28 Rare Disease and
DOI: 10.20517/rdodj.2024.29
Orphan Drugs Journal

Editorial Open Access

A landscape map of the key global rare disease
organizations

Anneliene Hechtelt Jonker 1,3 , Daniel J. O’Connor 2,3
1
TechMed Centre, University of Twente, Enschede 7522 NH, The Netherlands.
2
The Association of the British Pharmaceutical Industry, London SE1 2HB, UK.
3
International Rare Diseases Research Consortium, Paris 94200, France.
Correspondence to: Dr. Anneliene Hechtelt Jonker, TechMed Centre, University of Twente, Hallenweg 5, Enschede 7522 NH,
The Netherlands. E-mail: a.h.jonker@utwente.nl; Dr. Daniel J. O’Connor, The Association of the British Pharmaceutical Industry,
London SE1 2HB, UK. E-mail: doconnor@abpi.org.uk

How to cite this article: Jonker AH, O’Connor DJ. A landscape map of the key global rare disease organizations. Rare Dis Orphan
Drugs J 2024;3:28. https://dx.doi.org/10.20517/rdodj.2024.29

Received: 19 Sep 2024 Accepted: 26 Sep 2024 Published: 17 Oct 2024

Academic Editor: Daniel Scherman Copy Editor: Fangling Lan Production Editor: Fangling Lan

INTRODUCTION
In the last few decades, interest in the rare disease community and small population research has increased
substantially, driven by a wide range of issues and different stakeholders, including people living with rare
diseases, healthcare professionals, policy makers, funders, academia, industry, and others. As such, the field
of rare diseases has evolved and grown and will continue to do so. Pivotal to this growth is the support of a
variety of important rare disease-focused organizations that play a crucial role in advancing the research
and development of new medical technologies and leading on policy issues that matter most to patients.

A LANDSCAPE MAP OF THE KEY GLOBAL RARE DISEASE ORGANIZATIONS
This Special Issue showcased six key organizations that exemplify the sophistication and ambition of the
field alongside the drive to make a difference in the rare disease community. These papers provide
fascinating insights into the diversity of the field (including advocacy, not-for-profit and government-led
initiatives), the innovative approaches utilized, and key objectives.

© The Author(s) 2024. 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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