IHW Council, Level 3B, DLF Centre, Sansad Marg, Connaught Place, New Delhi (2026)

12/03/2026

STRENGTHENING CENTRES OF EXCELLENCE FOR aHUS & FABRY DISEASE

The closing session of the focused on strengthening India’s Centres of Excellence (CoEs) to improve diagnosis, treatment pathways, and long-term care for complex rare diseases such as aHUS and Fabry disease. Experts highlighted the need for stronger referral systems, better genetic diagnostics, sustainable financing models, and deeper collaboration between clinicians, technology providers, policymakers, and patient groups.

Key insights from the panel:

⭐ Prof. (Dr.) Arvind Bagga, Director – Paediatric Nephrology, Indraprastha Apollo Hospitals , New Delhi
Emphasised that early clinical suspicion is critical in conditions like aHUS where delayed diagnosis can lead to irreversible kidney damage, making physician awareness and referral systems essential.

⭐ Dr Ashwin Dalal, Head – Diagnostics Division, BRIC - Centre for DNA Fingerprinting and Diagnostics (CDFD)
Highlighted the role of advanced genetic testing and sequencing technologies in confirming rare disease diagnoses and guiding treatment decisions.

⭐ Dr. Priyanshu Mathur, Associate Professor, Paediatric Medicine, JK Lone Hospital, SMS Medical College - India
Shared the Rajasthan model of strengthening referral networks and financial support systems to improve treatment access for rare disease patients.

⭐ Mr Saurabh Singh, Co-Founder & Director, Rare Diseases India Foundation (RDIF)
Spoke about the real challenges faced by families, including delayed diagnosis, high treatment costs, and the urgent need for stronger national policies and patient registries.

⭐ Mr Arjun Gupta, Founder & CEO, Genetico Research & Diagnostics Pvt. Ltd.
Highlighted how AI-driven clinical decision support systems and digital health tools can assist clinicians in identifying rare diseases earlier and improving data-driven care pathways.

⭐ Ms Oshin Santoshi, Patient Advocacy Manager, AstraZeneca India
Guided the discussion on strengthening rare disease ecosystems through technology integration, policy alignment, and multi-stakeholder collaboration.

12/03/2026

COLLABORATIVE MODELS FOR RARE DISEASE SUPPORT
Voices that Shape Change: Aligning Policy, Care Systems & Community Leadership

This session focused on the critical role of collaboration in improving diagnosis, care pathways, and long-term support for rare disease patients. Experts discussed the need for stronger awareness among clinicians, improved genetic diagnostics, and coordinated care systems that connect hospitals, diagnostic providers, and patient communities.

Key insights from the panel:

⭐ Dr Swasti Pal, Associate Consultant, Sir Ganga Ram Hospital – Emphasised that delayed diagnosis remains one of the biggest challenges in rare diseases and highlighted the need to strengthen awareness among frontline physicians to identify early signs of genetic conditions.

⭐ Dr Seema Kapoor, Head, Genetic Lab, Maulana Azad Medical College (MAMC) – Stressed the importance of integrating genetics into medical education and strengthening newborn screening, physician training, and referral systems to improve early detection.

⭐ Mr Ramachandran Baskaran, Chief Scientific Officer, Nucleome Informatics Pvt Ltd – Highlighted advancements in genetic sequencing technologies and the importance of collaborative partnerships between hospitals and diagnostic laboratories to improve access to genomic testing.

⭐ Dr. Milan Choksey, Transplant Medical Lead, Sanofi – Guided the discussion on how partnerships across clinicians, diagnostics, industry, and patient groups can accelerate diagnosis and improve the overall rare disease care ecosystem.

The shared message:
Strengthening rare disease care requires early diagnosis, wider access to genetic testing, multidisciplinary clinical networks, and sustained collaboration between healthcare institutions, diagnostic providers, industry, and patient communities.

12/03/2026

NF1 CARE: ACCESS, EARLY DIAGNOSIS & LONG-TERM SUPPORT
Beyond Symptoms: Building a Continuum of Care for Neurofibromatosis Type 1

This session examined the complex realities of living with Neurofibromatosis Type 1 (NF1) and highlighted the urgent need for structured care pathways that move beyond diagnosis toward lifelong patient support. The discussion focused on improving early detection, strengthening diagnostic networks, expanding access to treatment, and building coordinated care systems through multi-stakeholder collaboration.

Key insights from the panel:

⭐ Prof. Dr Sheffali Gulati, Chief, Child Neurology Division, Coordinator, DM Paediatric Neurology Programme, AIIMS (All India Institute of Medical Sciences, New Delhi) – Emphasised the importance of multidisciplinary care models and structured referral pathways to ensure timely diagnosis and comprehensive management for NF1 patients.

⭐ Dr. Sandeep Arora, Country Medical Director, AstraZeneca India – Highlighted the importance of collaborative models between clinicians, industry, and policymakers to strengthen access pathways and build sustainable treatment ecosystems for rare diseases.

⭐ Dr Hemlata Wadhwani Bhatia,VP - Genomics, Agilus Diagnostics – Highlighted the role of genetic diagnostics, telemedicine, and expanded diagnostic access in reaching patients beyond metropolitan centres.

⭐ Dr Jyoti Bajpai, Medical & Precision Oncology, Apollo Hospitals Navi Mumbai – Spoke about the clinical complexity of NF1 and the importance of long-term monitoring to address complications such as tumor progression and cancer risks.

⭐ Dr Amit Talwar, Associate Secretary General, Indian Pharmaceutical Alliance – Stressed the need for stronger data systems, policy support, and collaborative innovation to accelerate research and treatment development for rare diseases.

⭐ Dr Ratna Devi, CEO, Dakshayani and Amaravati Health and Education – Guided the discussion toward patient-centric care models and emphasised the importance of coordinated efforts between clinicians, industry, policymakers, and patient communities.

12/03/2026

Rare diseases may affect a few individuals, but collectively they represent a national healthcare responsibility that demands urgent and collaborative action.

Addressing the Rare Disease Action Summit 2026, Dr.Anil Bonde, Hon’ble Member of Parliament and Chairperson, Indian Medical Parliamentarians’ Forum, emphasised the need for stronger national collaboration to address the growing burden of rare diseases.

He highlighted that while the National Policy for Rare Diseases has improved awareness and access to treatment, sustained efforts are needed to strengthen early diagnosis, physician awareness, and long-term treatment support for patients. Dr Bonde also stressed that addressing rare diseases requires joint action from government, medical institutions, industry, and society, supported by innovative funding models including CSR and public-private partnerships.

Reaffirming the vision of Viksit Bharat 2047, he called for a compassionate and inclusive healthcare system where rare disease patients receive timely care, dignity, and long-term support.

12/03/2026

Rare diseases may affect a few individuals, but collectively they represent a national healthcare responsibility that demands urgent and collaborative action.

Addressing the Rare Disease Action Summit 2026, Dr.Anil Bonde, Hon’ble Member of Parliament and Chairperson, Indian Medical Parliamentarians’ Forum, emphasised the need for stronger national collaboration to address the growing burden of rare diseases.

He highlighted that while the National Policy for Rare Diseases has improved awareness and access to treatment, sustained efforts are needed to strengthen early diagnosis, physician awareness, and long-term treatment support for patients. Dr Bonde also stressed that addressing rare diseases requires joint action from government, medical institutions, industry, and society, supported by innovative funding models including CSR and public-private partnerships.

Reaffirming the vision of Viksit Bharat 2047, he called for a compassionate and inclusive healthcare system where rare disease patients receive timely care, dignity, and long-term support.

12/03/2026

RARE DISEASES WITH CURATIVE OPTIONS
Changing the Rare Disease Landscape: Advances Toward a Cure

As scientific innovation begins to unlock curative possibilities for rare diseases like Spinal Muscular Atrophy (SMA), this session explored how India can translate these breakthroughs into real access for patients. The discussion focused on diagnosis pathways, multidisciplinary care, policy evolution, and the role of patient advocacy in shaping sustainable treatment access.

Key insights from the panel:

🌟 Dr Madhulika Kabra, Emeritus Scientist, Indian Council of Medical Research (ICMR) – Highlighted the significant progress India has made in genetic diagnostics and stressed the need for stronger referral networks to enable early diagnosis and timely treatment for rare diseases like SMA.

🌟 Dr Bhavna Dhingra Bhan, Professor of Pediatrics, AIIMS Bhopal – Emphasised the importance of strengthening awareness among clinicians and frontline healthcare providers to reduce delays in diagnosing rare diseases.

🌟 Dr Sheffali Gulati, Chief, Child Neurology Division, AIIMS (All India Institute of Medical Sciences, New Delhi) – Spoke about the need for multidisciplinary care frameworks for neuromuscular disorders, combining neurological, respiratory, and rehabilitation support for long-term patient management.

🌟 Ms Alpana Sharma, Co-founder & Trustee, Cure SMA Foundation of India – Shared the patient and caregiver perspective, underscoring the urgent need to make life-saving therapies both accessible and affordable for families.

🌟 Ms Purva Mittal, Regional Coordinator, ORDI – Highlighted the role of patient communities in driving awareness, advocacy, and policy engagement for rare disease care in India.

🌟 Mr Sreemanta Bhattacharya, Director, R S Associates – Framed the discussion around the rapid advancements in SMA therapies and the need to align innovation with policy, financing, and healthcare delivery systems.

The shared message:
Curative breakthroughs in rare diseases like SMA are redefining possibilities for patients. The next critical step is ensuring these innovations translate into early diagnosis, accessible treatment pathways, and sustained patient support across India.

12/03/2026

SUSTAINABLE FUNDING FOR RARE DISEASES
Bridging CSR and Government Initiative

This session focused on one of the most pressing challenges in the rare disease ecosystem — sustainable financing for treatment and long-term care. The discussion explored how government schemes, CSR initiatives, research institutions, and patient groups can work together to create funding models that ensure timely and equitable access to treatment.

Key insights from the panel:

🌟 Prof. (Dr) Sarman Singh, Former Director & CEO, AIIMS Bhopal, Stressed that awareness and early diagnosis remain critical gaps, and called for integrating rare diseases into existing national health programs and strengthening physician awareness.

🌟 Ms Srilakshmi Nalam, Co-founder & Trustee, Cure SMA Foundation of India, Highlighted the financial and emotional burden faced by families and emphasised the need for insurance coverage and structured long-term support systems.

🌟 Dr. Monika Pahuja, Scientist E, Indian Council of Medical Research (ICMR), spoke about the importance of research, clinical trials, and data generation in shaping policies and enabling affordable rare disease therapies.

🌟 Moderator: Dr. Ankit Panthari, Former Business Unit Head – Rare Diseases, Takeda, framed the conversation around innovative financing models and the need to align CSR, public health systems, and private sector participation.

The shared message:
Sustainable rare disease care will require coordinated funding models that combine government support, CSR engagement, research collaboration, and patient advocacy to ensure continuous and equitable access to treatment.

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12/03/2026

Rare Disease Day 2026: A Collective Call for Action

The Rare Disease Action Summit 2026 formally opened with a shared national call to strengthen awareness, policy alignment, and collaborative action for rare diseases. The inaugural session brought together government leaders, clinicians, industry experts, and patient advocates to set the tone for a day focused on solutions.

Key insights from the panel:

🌟 Shri Ramdas Athawale, Hon’ble Minister of State for the , GOI - Reaffirmed the government’s commitment to inclusive healthcare and emphasised that rare diseases must be addressed through social justice, policy action, and national collaboration.

🌟 Mr Kamal Narayan Omer, Founder & CEO, IHW Council - Emphasised that rare diseases are not only a medical challenge but also a policy and social responsibility issue, calling for stronger collaboration between research, industry, and patient communities.

🌟 Mr Deepak Arora, Managing Director, Sanofi India - Highlighted that closing the patient journey gap from screening and diagnosis to treatment and long-term care is essential to improving rare disease outcomes.

🌟 Dr. Sandeep Arora, Country Medical Director, AstraZeneca India - Spoke on the importance of strengthening referral pathways and ensuring sustained access to treatment beyond initial therapy initiation.

🌟 Dr Bhagwan Singh Charan, Additional Director General, Ministry of Health & Family Welfare, Government of India - Shared updates on the National Policy for Rare Diseases and the expansion of Centres of Excellence to strengthen diagnosis and care across the country.

The shared message:
Rare diseases demand stronger collaboration between government, research institutions, industry, and patient communities to ensure early diagnosis, equitable access to treatment, and long-term support for families.

12/03/2026

National leadership amplifying the rare disease dialogue.

The Rare Disease Action Summit 2026 was graced by Hon’ble Minister of State Shri Ramdas Athawale, who shared important perspectives on strengthening India’s response to rare diseases.

In his address, he highlighted that rare diseases are not only a medical challenge but also a matter of social justice and equitable access to healthcare. He also spoke about the Government of India’s commitment under the leadership of Prime Minister Shri Narendra Modi ji, including initiatives like the National Policy for Rare Diseases and Ayushman Bharat.

The Hon’ble Minister encouraged stronger collaboration between government, healthcare institutions, industry, and patient groups, and invited reflections from the summit to help further strengthen India’s rare disease framework as the country moves toward Viksit Bharat 2047.

11/03/2026

Today, India’s leading voices from government, healthcare, research, industry, and patient advocacy come together for the Rare Diseases Action Summit 2026 at New Maharashtra Sadan, New Delhi.

This premier national platform brings together policymakers, clinicians, scientists, and patient organizations to strengthen the dialogue around early diagnosis, sustainable treatment access, research innovation, and collaborative care models for rare diseases in India.

With distinguished participation from Hon’ble Minister of State Shri Ramdas Athawale, Hon’ble MP Dr Anil Sukhdevrao Bonde, senior officials from the Ministry of Health & Family Welfare, global healthcare leaders, leading researchers, and patient advocacy groups, the summit aims to accelerate meaningful action toward a stronger rare disease ecosystem.

Stay tuned as we bring you live insights, expert perspectives, and key takeaways from the conversations shaping the future of rare disease care in India.

10/03/2026

We are honored to welcome Shri Ramdas Athawale, Hon’ble Minister of State for Ministry of Social Justice and Empowerment, Government of India, Government of India, as the Chief Guest at the Rare Diseases Action Summit 2026.

As a strong voice for social inclusion and equitable access to welfare and healthcare, Shri Athawale has consistently advocated for policies that support vulnerable and underserved communities. His presence reinforces the importance of inclusive healthcare frameworks and stronger support systems for individuals living with rare diseases. His participation adds an important policy and social justice perspective to the national dialogue on strengthening care, access, and long-term support for rare disease communities.

🗓 Wednesday, March 11, 2026
📍New Maharashtra Sadan, New Delhi
🔗 Register Now: https://ihwcouncil.org/rare-disease-summit/

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