A slow shift to re-name 'atypical HUS'? https://lnkd.in/expxiAGb?? Not a single type, but a spectrum of disorders, aHUS has various causes (etiologies) & differences in clinical profiles. Behind nomenclature: better classifying types then discovering what drugs work best for each. #cmTMA #complement #aHUS #SHUa
关于我们
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 https://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.
- 网站
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https://www.ahusallianceaction.org
The Atypical HUS Alliance Action的外部链接
- 所属行业
- 保健和健身
- 规模
- 2-10 人
- 类型
- 非营利机构
- 创立
- 2015
- 领域
- Atypical HUS、aHUS、Atypical Hemolytic Uremic Syndrome、Rare disease、cTMA、Eculizumab、Ravulizumab、Complement、aHUS Alliance Global Action、aHUS Alliance和aHUS CAB
The Atypical HUS Alliance Action员工
动态
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Having an accurate & rapid diagnosis of the rare disease atypical HUS is key to gaining best chances for positive aHUS patient outcomes. https://lnkd.in/g85HUssc How so? #complement #ADAMTS13 #SHUa #aHUS #cmTMA #TMA
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Only 3 days left to respond to the AIRG Suisse, with Dr Fadi Fakhouri - this aHUS survey is open through 20 Nov 2024. https://lnkd.in/ePkZv8h5 We highlight their new initiative, a brief atypical HUS survey available in 6 languages. #AIRG #aHUS #SHUa #genetic #kidneydisease
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Eculizumab Biosimilars available in Europe & the USA:?an Update https://lnkd.in/dfXpmDEN #biosimilars #eculizumab #aHUS #SHUa #Bekemv #Epysqli #TMA #cmTMA #biosimilar #complement
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Clinical Trials EU:?The atypical HUS community has a new way to keep informed about aHUS clinical trials in Europe. https://lnkd.in/ep2TkbGX Learn more about the aHUS Alliance Global Action team & this partnership. ?#raredisease #clinicaltrial #CT #complement #TMA #pharma #drug
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Choice of aHUS treatments - what do atypical HUS patients want? https://lnkd.in/edn6UjpY?? Pros & Cons, from the patient & caregiver Point of View. #aHUS #SHUa #cmTMA #complement #PatientExperience??
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Meningo-aHUS study in Türkiye, an evaluation of meningococcal carriage in children & adolescents receiving eculizumab for aHUS https://lnkd.in/ey9-TagB #aHUS #atypicalHUS #Turkey #meningococcal #vaccines
Meningococcal Carriage in Children with Atypical Hemolytic Uremic Syndrome Receiving Eculizumab Therapy
pmc.ncbi.nlm.nih.gov
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aHUS & Haemorrhagic Stroke https://lnkd.in/exrpCTq8?"While primarily affecting renal microvasculature, aHUS can present with multi-organ involvement, posing significant diagnostic and therapeutic challenges." #aHUS #CNS #TMA?#cmTMA #atypicalHUS #casestudy
Unprecedented Haemorrhagic Stroke: A Rare Manifestation of Atypical Haemolytic Syndrome
pmc.ncbi.nlm.nih.gov
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Released for aHUS Awareness Day, our newest edition of the 2024-Sept-2025 Atypical HUS Fact Sheet, from the aHUS Alliance Global Action team!?Check it out here https://lnkd.in/efnrPJie? #aHUS is a rare type of #TMA. #SHUa #atypicalHUS #raredisease
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Discontinuing their complement inhibitor therapy is a hot topic for atypical HUS patients & the clinicians who treat them. https://lnkd.in/e2VJKYSi More on aHUS & Discontinuing Treatment, on our aHUS Alliance Global Action website.? #aHUS #SHUa #TMA