Atypical HUS & PNH - lots in common? https://lnkd.in/gEFvD_nh Special thanks to Dr Nick Burwick & to advocate Taylor A Coffman for their contributions to this article, with aHUS global advocate Len Woodward (UK). #atypicalHUS #complement #rarediseases #TMA #aHUS #TMA
The Atypical HUS Alliance Action
Health, Wellness & Fitness
We Connect- We Inform - We Collaborate
About us
aHUS Alliance Global Action: The aHUS Alliance, through international collaboration, will promote global awareness of aHUS, will work with international aHUS researchers and, by supporting newly emerging national aHUS patient groups, will bring relief and support to those affected by aHUS to save, and improve the quality of, more lives. As a group of patient organizations interested in the rare disease atypical hemolytic uremic syndrome (aHUS), its main focus is connecting information, people and organizations whose interests lie in research and medicine related to aHUS. "Connecting Informing Collaborating" For more information about the aHUS Alliance, visit http://www.ahusallianceaction.org/about/ Email: [email protected] aHUS alliance Global Action is registered as a charitable incorporated organisation in England and Wales, Registration No. 1167904.
- Website
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http://www.ahusallianceaction.org
External link for The Atypical HUS Alliance Action
- Industry
- Health, Wellness & Fitness
- Company size
- 2-10 employees
- Type
- Nonprofit
- Founded
- 2015
- Specialties
- Atypical HUS, aHUS, Atypical Hemolytic Uremic Syndrome, Rare disease, cTMA, Eculizumab, Ravulizumab, Complement, aHUS Alliance Global Action, aHUS Alliance, and aHUS CAB
Employees at The Atypical HUS Alliance Action
Updates
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Less than 3 weeks until 24 Sept, annual aHUS Awareness Day! Every case of atypical HUS is unique. Even among patients with the same genetic mutation, this rare disease presents with wide variations in duration, severity, and organs affected. #aHUS24Sept #aHUS #TMA #complement #SHUa
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Invitation to EU Caregivers & Patients with Complement Diseases (*#aHUS *C3 #glomerulopathy *IC-#MPGN) to Patients Day 2024 on 14 & 15 Sept 2024 in Berlin. European Reference Network Hosts: CompCure Foundation with Selbsthilfegruppe MPGN Und aHUS E.V FMI & Program https://lnkd.in/eptzNU-8
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What's happening to interest the atypical HUS community regarding new aHUS clinical trials in Europe? https://lnkd.in/ep2TkbGX The aHUS Alliance Global Action team announces a new partnership. #raredisease #complement #TMA #pharma #drug #aHUS #atypicalHUS ClinicalTrials.EU #cmTMA
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Characterization of patients with atypical HUS and associated triggers or clinical conditions: A Global aHUS Registry analysis https://lnkd.in/eprC6QpR Think #aHUS when considering #TMA diagnostics.
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This month we'll celebrate our 10th aHUS Awareness Day, 24 Sept - the 2024 theme is 'Mental Health'. Share info, visual abstracts & insights to raise awareness of atypical HUS rare form of thrombotic microangiopathy (TMA). Info & Resources for #aHUS24Sept at https://bit.ly/aHUSdayInfo
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Goodbye August - we're looking forward to the 10th annual 24 Sept aHUS Awareness Day campaign! The 2024 theme for #aHUS24Sept is 'Mental Health' https://lnkd.in/eWm4TYE5 FMI on #aHUSday & the aHUS patient and caregiver project (entry deadline is 17 Sept) #aHUS #PatientExperience #Caregiver #MentalHealth
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People living with the raredisease atypical HUS - and their family members - exemplify what it means to be resilent. 24 Sept 2024 marks aHUS Awareness Day! Visit https://lnkd.in/ez_kdyMH FMI on aHUS Alliance Global Action & the 24 Sept goals. #cmTMA #aHUS #SHUa
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Out with the old name 'atypical HUS' in with the new... but what might that be? https://lnkd.in/evnC7Vtb On classification & nomenclature regarding aHUS. Or is that 'cmTMA'? Or 'Primary TMA', or something else? #aHUS #cmTMA #PrimaryTMA #atypicalHUS
Is aHUS' end nigh? It is now! - aHUS Alliance Action
https://www.ahusallianceaction.org
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Atypical HUS - outdated & too broad a term? https://lnkd.in/eYBVbNh5 Making the case for moving beyond the 1970s 'atypical hemolytic uremic syndrome' toward more specific nomenclature. #TMA #aHUS #cmTMA #PrecisionMedicine #etiology #genetics #SHUa
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