Though atypical hemolytic uremic syndrome (aHUS) affects only 2 to 9 people per million globally, treatment strategies must include regional considerations because patient profiles can vary by geography. To accommodate diverse regional aHUS patient profiles, clinicians need to tailor treatment protocols and disease management strategies for specific nations, such as Japan (characterized by the p.Arg885His C5 mutation) and for aHUS patients in India.
To mark this year’s 12th aHUS Awareness Day campaign, The Atypical HUS India Foundation hosted an impactful webinar on 24 September 2026. During this aHUS India webinar, Dr. Manisha Sahay was among a stellar panel of presenters and made a convincing case for a ‘Hub and Spoke’ model, designed to optimize aHUS diagnosis and patient care in every corner of the country. Here’s an overview of this innovative idea.
aHUS Patients in India
While Western atypical HUS patient profiles are primarily defined by genetic complement mutations, India faces a vastly different clinical reality. Here, more than 50% of pediatric aHUS cases are driven by auto-reactive anti-CFH antibodies—a stark contrast to the 5–24% seen in Western children. In his publication, “Anti-Factor H Antibody Hemolytic Uremic Syndrome: A Disease in Need of ‘Make in India’ Management,” Dr. V Lobo emphasized that challenges in effective management include diagnostic delays and limited healthcare resources plus realities which are complex and require collaborative efforts to address.
This unique clinical burden demands specialized local protocols. India’s strategy to address this gap has relied on structural healthcare reforms: beginning with the designation of Centres of Excellence (CoEs) under the 2021 National Policy for Rare Diseases (NPRD), and advancing to the Central Drugs Standard Control Organisation’s (CDSCO) landmark drug approvals in January 2025 for eculizumab to treat aHUS and PNH patients. The aHUS India Foundation has worked extensively to unite international insights with local action, amplifying patient voices and collaborating with clinicians, researchers and others in the aHUS arena.
aHUS India Foundation – Advocacy Leadership
This national advocacy group serves as a vital anchor for patients and families navigating the complexities of atypical Hemolytic Uremic Syndrome in India, providing essential information and advocacy on timely diagnosis, government support programs, and local Centers of Excellence. Founder Kamal D Shah – an aHUS patient himself, a co-founder of NephroPlus, and a member of the global Community Advisory Board (Stichting aHUS CAB Foundation)—also serves as a founding member of the aHUS Alliance Global Action team to ensure Indian patient voices resonate on the international stage.
Organizing its aHUS Awareness Day webinar on 24 September 2026, the aHUS India Foundation speaker Dr Manisha Sahay introduced a compelling strategy to transform patient care: a “Hub and Spoke” model for diagnosis and disease management. This structural refinement has the potential to dramatically improve patient outcomes across India by balancing specialized expertise with local accessibility.
How would such a “Hub and Spoke” concept work for the aHUS community in India?
Under this model, existing Centres of Excellence (CoEs) serve as the central hubs. These CoEs anchor the network by providing advanced diagnostic tools, deep medical expertise, structural guidance, specialized testing, and critical clinical and research support. Radiating from these hubs are the “spokes”—local healthcare providers equipped to manage day-to-day patient care, routine monitoring, and immediate triage.
This interdependent network addresses two critical challenges: it prevents local doctors from becoming overwhelmed by an incredibly complex disease while ensuring that the CoEs can effectively extend their reach to patients who cannot travel to major medical centers. By aligning centralized expertise with localized hands on the ground, the model ensures comprehensive, nationwide support for the aHUS community.
aHUS India Website- on Adopting a “Hub and Spoke” Model to Improve Patient Outcomes
Click below to read a more in-depth article (30 Sept 2026)
When Every Minute Counts: Rethinking aHUS Care in India
Contact the aHUS India Foundation E: ahusindia@gmail.com
Learn More: View the Webinar Summary
aHUS India – aHUS Awareness Day 2026 Webinar: Summary and Key Takeaways (24 Sept 2026)
aHUS India – Webinar Summary for Doctors: Beyond the Illusion: Unravelling the Puzzle of aHUS (Nov 2025)
