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An EU task force to assess the burden of rare diseases

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Fig. 1: Organizations and initiatives in research on the burden of rare diseases.

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Author information

Authors and Affiliations

  1. Institute of Allergology, Charité–Universitätsmedizin Berlin, Berlin, Germany

    Pavel Kolkhir & Marcus Maurer

  2. Allergology and Immunology, Fraunhofer Institute for Translational Medicine and Pharmacology ITMP, Berlin, Germany

    Pavel Kolkhir & Marcus Maurer

  3. Department of Public Health, Babeş-Bolyai University, Cluj-Napoca, Romania

    Diana Alecsandra Grad

  4. Department of Public Health, Erasmus MC University Medical Center, Rotterdam, the Netherlands

    Periklis Charalampous, Claudia Cruz Oliveira & Juanita Haagsma

  5. Department of Healthcare, Faculty of Health, University of Vlora, Vlora, Albania

    Enkeleint A. Mechili

  6. School of Medicine, University of Crete, Heraklion, Greece

    Enkeleint A. Mechili

  7. Department of Cardiovascular, Endocrine-Metabolic Diseases and Aging, Istituto Superiore di Sanità, Rome, Italy

    Brigid Unim

  8. Pediatrics & Rare Diseases Group, Sanford Research, Sioux Falls, SD, USA

    David A. Pearce

  9. Sanford Health, Sioux Falls, SD, USA

    David A. Pearce

  10. Sanford School of Medicine, University of South Dakota, Sioux Falls, SD, USA

    David A. Pearce

  11. Department of Epidemiology and Public Health, Sciensano, Brussels, Belgium

    Brecht Devleesschauwer

  12. Department of Translational Physiology, Infectiology and Public Health, Ghent University, Merelbeke, Belgium

    Brecht Devleesschauwer

Authors
  1. Pavel Kolkhir
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  2. Diana Alecsandra Grad
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  3. Periklis Charalampous
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  4. Claudia Cruz Oliveira
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  5. Enkeleint A. Mechili
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  6. Brigid Unim
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  7. David A. Pearce
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  8. Marcus Maurer
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  9. Brecht Devleesschauwer
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  10. Juanita Haagsma
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Corresponding author

Correspondence to Pavel Kolkhir.

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Competing interests

P.K. was a speaker/consultant for Novartis, Roche and ValenzaBio. M.M. is or recently was a speaker and/or advisor for and/or has received research funding from Astria, Allakos, Alnylam, Amgen, Aralez, ArgenX, AstraZeneca, BioCryst, Blueprint, Celldex, Centogene, CSL Behring, Dyax, FAES, Genentech, GIInnovation, GSK, Innate Pharma, Kalvista, Kyowa Kirin, Leo Pharma, Lilly, Menarini, Moxie, Novartis, Pfizer, Pharming, Pharvaris, Roche, Sanofi/Regeneron, Shire/Takeda, Third Harmonic Bio, UCB and Uriach. All other authors declare no competing interests.

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Kolkhir, P., Grad, D.A., Charalampous, P. et al. An EU task force to assess the burden of rare diseases. Nat Med 29, 516–517 (2023). https://doi.org/10.1038/s41591-023-02207-9

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  • DOI: https://doi.org/10.1038/s41591-023-02207-9

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