2024 – SEPT – 2025
Atypical HUS: Fact Sheets & Research
Atypical Hemolytic Uremic Syndrome – a Rare Disease
Information and medical knowledge can change rapidly, which can be problematic for those looking for the latest facts and key research about the rare disease atypical hemolytic uremic syndrome (atypical HUS or aHUS).
Each year the aHUS Alliance Global Action team has created a robust and varied set of images and resources for the aHUS Awareness Day campaigns, held each 24 September. (On X/Twitter @aHUS24Sept and main account @aHUSallianceAct )
CLICK HERE to Read & Print our pdf:
2024 – Sept – 2025
Share its Link as: https://bit.ly/aHUS2024facts
Don’t miss these Highlights – see more by visiting
Atypical HUS Research & Publications – a ‘Virtual Library’, organized by Topic
RESOURCES & Key Assets – An index to Information, Networks, and Articles
Interested in atypical HUS Facts & want to Learn More?
Here are the publications referenced to create our 2024 – Sept – 2025 aHUS Fact Sheet, with our sincere appreciation to the clinicians, researchers, and other authors for their work:
Research- Citations listed Alphabetically:
Ardissino G, Longhi S, Porcaro L, Pintarelli G, Strumbo B, Capone V, Cresseri D, Loffredo G, Tel F, Salardi S, Sgarbanti M, Martelli L, Rodrigues EM, Borsa-Ghiringhelli N, Montini G, Seia M, Cugno M, Carfagna F, Consonni D, Tedeschi S. Risk of Atypical HUS Among Family Members of Patients Carrying Complement Regulatory Gene Abnormality. Kidney Int Rep. 2021 Mar 25;6(6):1614-1621. doi: 10.1016/j.ekir.2021.03.885. PMID: 34169201; PMCID: PMC8207326.
Bouwmeester RN, Engel LJ, Altena W, Renette C, van Daelen C, van Kempen E, de Wildt R, van de Kar NCAJ. Living with Atypical Hemolytic Uremic Syndrome in the Netherlands: Patient and Family Perspective. Kidney Int Rep. 2024 Apr 27;9(7):2189-2197. doi: 10.1016/j.ekir.2024.04.047. PMID: 39081735; PMCID: PMC11284443.
Brocklebank V, Walsh PR, Smith-Jackson K, Hallam TM, Marchbank KJ, Wilson V, Bigirumurame T, Dutt T, Montgomery EK, Malina M, Wong EKS, Johnson S, Sheerin NS, Kavanagh D. Atypical hemolytic uremic syndrome in the era of terminal complement inhibition: an observational cohort study. Blood. 2023 Oct 19;142(16):1371-1386. doi: 10.1182/blood.2022018833. PMID: 37369098; PMCID: PMC10651868.
Fakhouri F, Schwotzer N, Frémeaux-Bacchi V. How I diagnose and treat atypical hemolytic uremic syndrome. Blood. 2023 Mar 2;141(9):984-995. doi: 10.1182/blood.2022017860. PMID: 36322940.
Formeck C, Swiatecka-Urban A. Extra-renal manifestations of atypical hemolytic uremic syndrome. Pediatr Nephrol. 2019 Aug;34(8):1337-1348. doi: 10.1007/s00467-018-4039-7. Epub 2018 Aug 14. PMID: 30109445; PMCID: PMC8627279.
Kavanagh D, Goodship TH, Richards A. Atypical hemolytic uremic syndrome. Semin Nephrol. 2013 Nov;33(6):508-30. doi: 10.1016/j.semnephrol.2013.08.003. PMID: 24161037; PMCID: PMC3863953.
Licht C, Ardissino G, Ariceta G, Cohen D, Gasteyger C, Greenbaum L, Ogawa M, Varant Kupelian V, Schaefer F, Vande Walle J, Véronique Frémeaux-Bacchi V. The Global aHUS Registry: Characteristics of 826 Patients with Atypical Hemolytic Uremic Syndrome. Blood (2015) 126 (23): 4640. doi.org/10.1182/blood.V126.23.4640.4640
Licht C, Al-Dakkak I, Anokhina K, Isbel N, Frémeaux-Bacchi V, Gilbert R, Greenbaum L, Ariceta G, Ardissino G, Schaefer F, Rondeau E. Characterization of patients with aHUS and associated triggers or clinical conditions: A Global aHUS Registry analysis. Nephrology. 2024; 29(8): 519-527. doi:10.1111/nep.14304
Moradiya P, Khandelwal P, Raina R, Ruchi Gupta Mahajan. Systematic Review of Individual Patient Data COVID-19 Infection and Vaccination–Associated Thrombotic Microangiopathy. Kidney International Reports, ISSN 2468-0249, doi.org/10.1016/j.ekir.2024.07.034.
Nester CM, Feldman DL, Burwick R, Cataland S, Chaturvedi S, Cook HT, Cuker A, Dixon BP, Fakhouri F, Hingorani SR, Java A, van de Kar NCAJ, Kavanagh D, Leung N, Licht C, Noris M, O’Shaughnessy MM, Parikh SV, Peyandi F, Remuzzi G, Smith RJH, Sperati CJ, Waldman M, Walker P, Vivarelli M. An expert discussion on the atypical hemolytic uremic syndrome nomenclature-identifying a road map to precision: a report of a National Kidney Foundation Working Group. Kidney Int. 2024 Sep;106(3):326-336. doi: 10.1016/j.kint.2024.05.021. PMID: 39174192.
Noris M and Remuzzi G. Atypical hemolytic-uremic syndrome. N Engl J Med. 2009 Oct 22;361(17):1676-87. doi: 10.1056/NEJMra0902814. PMID: 19846853.
Raina R, Krishnappa V, Blaha T, Kann T, Hein W, Burke L, Bagga A. Atypical Hemolytic-Uremic Syndrome: An Update on Pathophysiology, Diagnosis, and Treatment. Ther Apher Dial. 2019 Feb;23(1):4-21. doi: 10.1111/1744-9987.12763. Epub 2018 Oct 29. PMID: 30294946.
Rondeau E, Ardissino G, Caby-Tosi MP, Al-Dakkak I, Fakhouri F, Miller B, Scully M; Global aHUS Registry. Pregnancy in Women with Atypical Hemolytic Uremic Syndrome. Nephron. 2022;146(1):1-10. doi: 10.1159/000518171. Epub 2021 Sep 7. PMID: 34515154; PMCID: PMC8820436.
Schaefer F, Ardissino G, Ariceta G, Fakhouri F, Scully M, Isbel N, Lommelé A, Kupelian V, Gasteyger C, Greenbaum L, Ogawa M, Licht C, Vande Walle J, Frémeaux-Bacchi V. on behalf of the Global aHUS Registry. Clinical and genetic predictors of atypical hemolytic uremic syndrome phenotype and outcome. Kidney International, Volume 94, Issue 2, 408 – 418
Spasiano A, Palazzetti D, Dimartino L, Bruno F, Baccaro R, Pesce F, Grandaliano G. Underlying Genetics of aHUS: Which Connection with Outcome and Treatment Discontinuation? Int J Mol Sci. 2023 Sep 24;24(19):14496. doi: 10.3390/ijms241914496. PMID: 37833944; PMCID: PMC10572301.
Vivarelli M, Barratt J, Beck LH Jr, Fakhouri F, Gale DP, Goicoechea de Jorge E, Mosca M, Noris M, Pickering MC, Susztak K, Thurman JM, Cheung M, King JM, Jadoul M, Winkelmayer WC, Smith RJH; for Conference Participants. The role of complement in kidney disease: conclusions from a Kidney Disease: Improving Global Outcomes (KDIGO) Controversies Conference. Kidney Int. 2024 Sep;106(3):369-391. doi: 10.1016/j.kint.2024.05.015. Epub 2024 Jun 4. PMID: 38844295.
Westra D, Volokhina E.B., van der Molen, R.G. et al. Serological and genetic complement alterations in infection-induced and complement-mediated hemolytic uremic syndrome. Pediatr Nephrol 32, 297–309 (2017). https://doi.org/10.1007/s00467-016-3496-0
Yerigeri K, Kadatane S, Mongan K, Boyer O, Burke LLG, Sethi SK, Licht C, Raina R. Atypical Hemolytic-Uremic Syndrome: Genetic Basis, Clinical Manifestations, and a Multidisciplinary Approach to Management. J Multidiscip Healthc. 2023 Aug 4;16:2233-2249. doi: 10.2147/JMDH.S245620. PMID: 37560408; PMCID: PMC10408684.
