Management of rare genitourinary malignancies often depends on individual physicians’ discretion, resulting in non-standardized care. Furthermore, patients experience worse clinical outcomes than patients with common malignancies. Collaborative efforts such as the Global Society of Rare Genitourinary Tumors (GSRGT) are therefore necessary.
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P.E.S. serves as Vice-Chair and panel member of the NCCN bladder and penile cancer committee and President of the Global Society of Rare GU Tumors. A.N. serves as panel member of the European Association of Urology (EAU) penile cancer guidelines and Vice-President of the Global Society of Rare GU Tumors. A.N. has received consulting fees from Astellas/Seattle Genetics, AstraZeneca, Bayer, Clovis Oncology, Ferring, Immunomedics, Incyte, Janssen, Merck, Rainier Therapeutics and Roche; grant and/or research support from AstraZeneca, Ipsen and Merck; and travel expenses and/or honoraria from AstraZeneca, Janssen, Merck, and Roche. F.P. and M.B. declare no competing interests.
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EC 141/2000: https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=celex%3A32000R0141
EC 847/2000: https://eur-lex.europa.eu/legal-content/EN/TXT/?uri=CELEX%3A32000R0847
European Commission on rare diseases: https://ec.europa.eu/health/non_communicable_diseases/rare_diseases_en
Genetic and Rare Diseases Information Center: https://rarediseases.info.nih.gov/diseases/pages/31/faqs-about-rare-diseases
Global Society of Rare Genitourinary Tumors: https://www.gsrgt.com/
Orphan Drug Act: https://www.fda.gov/industry/designating-orphan-product-drugs-and-biological-products/orphan-drug-act-relevant-excerpts
Surveillance of Rare Cancers in Europe: http://www.rarecare.eu/
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Necchi, A., Pederzoli, F., Bandini, M. et al. Revolutionizing care for rare genitourinary tumours. Nat Rev Urol 18, 69–70 (2021). https://doi.org/10.1038/s41585-020-00402-8
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DOI: https://doi.org/10.1038/s41585-020-00402-8
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