Atypical HUS India

Providing support and information to Atypical Hemolytic Uremic Syndrome patients and family from India

[Atypical HUS India @ahusindia]

A Hub and Spoke model was proposed by @drmanishasahay during the webinar held on aHUS Awareness Day. Leading global advocate Linda Burke fleshed that idea out and wrote this article on rethinking aHUS care in India. @PatientsEngage @NephoPlus @AstraZeneca

https://t.co/YvY6V0tcJw

[Atypical HUS India @ahusindia]

Summary and Key Takeaways of the webinar held on aHUS Awareness Day by the Atypical HUS India Foundation and @PatientsEngage supported by @NephroPlus and @AstraZeneca.

https://t.co/XStTo7rwaI

[Atypical HUS India @ahusindia]

The aHUS India Foundation along with @PatientsEngage recently hosted a webinar featuring leading researchers and clinicians specializing in atypical hemolytic uremic syndrome. The webinar was held on Sep 24 in recognition of aHUS Awareness Day.

https://t.co/EUZvDcfGC3

[aHUS Awareness Day @aHUS24Sept]

Thank you @patientsengage & @ahusindia for today's webinar #aHUS24Sept w/ great #aHUS content & excellent speakers covering key topics like diagnosis, treatment concerns, genetics & patient navigation challenges. We appreciate the support from @nephroplus & @AstraZeneca

[aHUS Awareness Day @aHUS24Sept]

Today is aHUS Awareness Day 2026 #aHUS24Sept - Atypical HUS families wanted to be heard: From 14 nations 39 entries share perspectives on renaming aHUS. New knowledge & more precise naming can support individualized treatment tailored to patient needs. https://t.co/IXlYMlBvwU

[Atypical HUS India @ahusindia]

Happy aHUS Awareness Day! Webinar happening today at 6 PM IST. Link to join: https://t.co/QoKScAKeyS @aHUS24Sept @aHUSAllianceAct @cTMAGlobal @raja_1980 @drmanishasahay @Narayansgpgims @PatientsEngage @nephroplus @AstraZeneca

[Atypical HUS India @ahusindia]

Do not miss this important webinar on #aHUSAwarenessDay on Sep 24 at 6 PM IST! Please block your calendars now. Here is the link to join: https://t.co/QoKScAKeyS

[Atypical HUS India @ahusindia]

Do not miss this important webinar on #aHUSAwarenessDay on Sep 24 at 6 PM IST! Please block your calendars now. Here is the link to join: https://t.co/QoKScAKeyS

[Atypical HUS India @ahusindia]

A webinar with some stellar speakers is being organised on #aHUSAwarenessDay,September 24th at 6 PM IST. The webinar will cover some very important topics. @aHUS24Sept @aHUSAllianceAct @cTMAGlobal @raja_1980 @drmanishasahay @Narayansgpgims @PatientsEngage @nephroplus @AstraZeneca

[PatientsEngage @PatientsEngage]

Do not miss this very useful webinar with experts on #aHUSAwarenessDay 24th Sept 6pm IST !
Will cover some very important topics like genetic testing, patient navigation challenges. See attached flyer for joining details. @ahusindia @nephroplus @AstraZeneca

[Atypical HUS India @ahusindia]

A webinar with some stellar speakers is being organised on #aHUSAwarenessDay,September 24th at 6 PM IST. The webinar will cover some very important topics. @aHUS24Sept @aHUSAllianceAct @cTMAGlobal @raja_1980 @drmanishasahay @Narayansgpgims @PatientsEngage @nephroplus @AstraZeneca

[Atypical HUS India @ahusindia]

Did you know that a name change is being considered for aHUS? What impact will that have on all of us as patients? Please read up about this on this link: https://t.co/mM0uS2LA6x

Make your voice heard by voting where you stand on the name change here: https://t.co/BamoDTGmBr

[Atypical HUS India @ahusindia]

@aHUSAllianceAct @kamaldshah

[Atypical HUS India @ahusindia]

Patients with #aHUS from #India get a voice at this conference.

[Atypical HUS India @ahusindia]

@aHUSAllianceAct @kamaldshah

[Atypical HUS India @ahusindia]

Happening now - Workshop on #aHUS organised by the Institute of Health and Family Welfare, Government of West Bengal.

[Atypical HUS India @ahusindia]

A virtual meeting was held between leading nephrologists and geneticists on the 1st April. The meeting was held to arrive at a consensus on diagnosis of aHUS.This was hosted by the the aHUS India Foundation and was supported by NephroPlus and AstraZeneca.
https://t.co/8pSv7VITeM

[Shashi Tharoor @ShashiTharoor]

As the world observes International #RareDiseasesDay today, it is worth taking stock of where India stands for its estimated 70-100 million rare disease patients. In December 2025, I wrote to Health Minister @JPNadda (attached), highlighting the crisis of interrupted treatment for conditions such as Gaucher, Pompe, and MPS Type I. The Delhi High Court had directed the Centre to allocate ₹974 crore for uninterrupted treatment—a directive since stayed by the Supreme Court, leaving many without treatment.

The Ministry's reply reiterated that assistance under NPRD remains capped at ₹50 lakh per patient, sidestepping the core concern. A one-time cap is ill-suited for chronic conditions requiring lifelong therapy, since the patients are left with no recourse: as of February 2025, of the 577 patients suffering from Group 3(a) diseases, 364 were untreated, 40 had exhausted their monetary assistance, and 28 had died.

The Ministry's suggestion to "bridge the gap" through crowdfunding on a Digital Portal for Voluntary Donations becomes difficult to justify when ₹299.5 crore already allocated for rare diseases in FY 2025–26 remains unutilised. Only 15 Centres of Excellence exist nationwide, making even existing support inaccessible for many.

On this Rare Diseases Day, I hope the Centre revisits the NPRD framework urgently, co-opts the private sector through CSR, and establishes a sustainable funding mechanism—before more lives are lost.

[Atypical HUS India @ahusindia]

This is an appeal to all CoEs to process funding applications for atypical HUS quickly. Delays can endanger patients' lives and lead to death or kidney failure requiring dialysis.

https://t.co/kyqPqnb7eg

[Atypical HUS India @ahusindia]

"For this plan to work, the government and CoEs need to cooperate and ensure that enough vials are available at each center. This way, patients can receive immediate treatment while waiting for further tests to confirm the diagnosis."

https://t.co/ierYUEGXNo

[Atypical HUS India @ahusindia]

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[Atypical HUS India @ahusindia]

Beyond the Illusion: Unravelling the Puzzle of aHUS: Webinar Video: https://t.co/v4ODXIMCvV

Summary for Patients: https://t.co/ejvmcMHQO7
Summary for Doctors: https://t.co/J6mPNcdd5D