Atypical HUS India
@ahusindia
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Providing support and information to Atypical Hemolytic Uremic Syndrome patients and family from India
India
Joined November 2014
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This ruling is very far-reaching and impactful if the directions are followed in letter and spirit by the parties concerned. Delhi High Court Judgement on Rare Diseases #ahus #india #rarediseases @aHUSAllianceAct @aHUSUKvoice @sidsdoc @rupeshrainamd
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Let us work together towards getting treatment available to every individual in the country! Happy aHUS Awareness Day! 2/2
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Today is aHUS Awareness Day. Now is a time like no other for aHUS patients in India. For the first time, we have clinical trials going on in India. And the only approved drug for the disease has been approved for sale in the country. 1/2
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RT @aHUSAllianceAct: सभी देशों के #aHUS रोगियों और परिवार देखभालकर्ताओं को हमारे वैश्विक समुदाय सर्वेक्षण में भाग लेने के लिए आमंत्रित किया…
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Have you participated in the #aHUS Global #Diagnosis Survey 2024? Available in 10 languages incouding #Hindi. See link below for more information!
From 2014 to 2024, how much has changed and what remains the same for people diagnosed with atypical HUS? All #aHUS patients & family caregivers - we invite your participation!
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Looks like aHUS is the flavour of the month at the CDSCO!
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In some very welcome news for Indian aHUS patients who are not generally used to any such news, the Experts Committee under India's drug regulator, CDSCO has recommended to grant approval to import and market the drug Soliris (Eculizumab) in India.
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Finally!
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Getting pregnant while you have been diagnosed with # aHUS can be quite intimidating. Can the ladies who have been diagnosed with aHUS please take this survey for researchers to understand how you view this sensitive topic? Thanks!
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#RT @aHUSAllianceAct: With growth of patient involvement in the development of medicines, as well as their regulation and use, we look at ethics in the #aHUS space #raredisease #patientengagement
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#RT @aHUSAllianceAct: We appreciate that @masoodi96 Author @kamaldshah details unexpected twists in his journey of overcoming challenges to find the 'Silver Lining' in life & business success. FMI & links #dialysis #nephrology @…
@ahusindia @aHUSAllianceAct @nephroplus Congratulations 👏. Looking forward to read this inspirational story from kamal Shah.
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