IHW Summit 2026 Highlights Need for Better Rare Disease Care

India’s rare disease ecosystem took centre stage at the Rare Diseases Action Summit 2026 in New Delhi, organised by the IHW Council, bringing together policymakers, healthcare leaders, patient advocates, industry experts and researchers to discuss solutions for diagnosis, treatment access, funding and long-term care for rare disease patients.

Delivering the keynote address as the Chief Guest, Union Minister of State for Social Justice and Empowerment Ramdas Athawale emphasized the need for stronger collaboration across government institutions, healthcare providers, industry stakeholders and patient communities to ensure equitable access to treatment and support systems for individuals living with rare diseases.

“Rare diseases often place an immense emotional, medical and financial burden on families, and many patients struggle for years to find the right diagnosis and care. Ensuring that individuals living with rare conditions receive timely support is an important part of building a more inclusive healthcare system. The Government remains committed to strengthening institutional support, expanding access to treatment assistance, and working with medical experts, research institutions and patient groups so that those affected by rare diseases are not left behind in the healthcare system. Every patient deserves dignity, care and the opportunity to lead a better quality of life,” said Ramdas Athawale.

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The summit opened with a welcome address by Kamal Narayan Omer, Founder and CEO of IHW Council, who highlighted the urgency of collective action in addressing the complex challenges surrounding rare diseases in India and globally, stressing the importance of policy alignment, early diagnosis, and sustainable funding to improve patient outcomes. The inaugural session also featured industry perspectives from Deepak Arora, Managing Director, Sanofi India, and Sandeep Arora, Country Medical Director, AstraZeneca India, who spoke about the pharmaceutical industry’s role in advancing innovation, strengthening research and early screening, and fostering multi-stakeholder collaboration to improve treatment access for rare disease patients.

A special address was delivered by Bhagwan Singh Charan, Additional Director General, Ministry of Health and Family Welfare, Government of India, who spoke about strengthening institutional mechanisms for rare disease diagnosis, treatment support, and patient registries within the evolving national health framework.

The summit also featured focused discussions on strengthening India’s rare disease ecosystem, including “Sustainable Funding for Rare Diseases: Bridging CSR and Government Initiatives.” Another discussion, “Rare Diseases with Curative Options: Advances Toward a Cure,” examined scientific progress for conditions such as Spinal Muscular Atrophy (SMA).

The session “NF1 Care: Access, Early Diagnosis and Long-Term Support” addressed the unmet needs of individuals living with Neurofibromatosis Type 1 (NF1) and featured a special address by Anil Sukhdevrao Bonde, Member of Parliament and Chairperson, Indian Medical Parliamentarians Forum.

“Under the leadership of Honorable Prime Minister Shri Narendra Modi, India has taken significant policy steps to address the challenges associated with rare diseases. The National Policy for Rare Diseases and the development of Centres of Excellence represent important milestones in strengthening the country’s capacity to diagnose and treat these complex conditions. At the same time, conditions such as Neurofibromatosis Type 1 highlight the importance of strengthening early detection, improving access to specialised care, and ensuring long-term clinical and social support for patients and their families. Policymakers, healthcare institutions, researchers and patient groups must continue working together to expand treatment access and build stronger care pathways for individuals living with rare diseases,” said Anil Sukhdevrao Bonde, Member of Parliament and Chairperson, Indian Medical Parliamentarians Forum.

“Strengthening the rare disease ecosystem requires building robust institutional frameworks that support early diagnosis, expand access to genetic testing and specialised care, and ensure that patients are connected to the right treatment pathways at the right time. Strengthening national registries, improving referral networks, and enhancing collaboration between research institutions, clinicians and public health systems will be essential to ensure that patients with rare diseases are identified earlier and are able to access appropriate care and support,” said Bhagwan Singh Charan, Additional Director General, Ministry of Health and Family Welfare, Government of India.

Leading neurologists, oncologists, diagnostic experts, and industry representatives during the summit also discussed the importance of early diagnosis, improved access to treatment, and long-term psychosocial and rehabilitation support for patients.

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Reflecting on the broader policy and healthcare landscape surrounding rare diseases, Kamal Narayan Omer, Founder and CEO, IHW Council, said, “Rare diseases may be individually uncommon, but collectively they represent a significant public health responsibility affecting millions of families. Rare diseases are often described through the word ‘rare,’ but when we look at their collective impact, the picture changes dramatically. Globally, more than 7,000 rare diseases have been identified, and in India alone it is estimated that 70 to 96 million people may be living with a rare disease. At that scale, rarity is no longer rare, it becomes a significant public health responsibility. Many patients, particularly children, often face a long and difficult diagnostic journey before receiving the right care. The Government of India has taken important steps through initiatives such as the National Policy for Rare Diseases, financial assistance for eligible patients, and the establishment of Centres of Excellence, and these efforts deserve recognition. At the same time, addressing rare diseases requires deeper collaboration across policy, science, healthcare systems, industry and patient communities. Strengthening early diagnosis, expanding access to specialised diagnostics and innovative therapies, and exploring collaborative financing models will be critical to ensuring that patients and families affected by rare diseases receive timely care and support.”

Experts also examined systemic challenges surrounding conditions such as atypical Hemolytic Uremic Syndrome (aHUS) and Fabry disease in the session “Strengthening Centres of Excellence for aHUS and Fabry Disease.” Discussions highlighted gaps in genetic diagnostic infrastructure, referral pathways, and financing mechanisms, while emphasizing the importance of building specialized Centres of Excellence for rare disease care.

The summit concluded with a networking session that allowed stakeholders across government, academia, healthcare institutions, pharmaceutical companies, and patient organizations to exchange insights and explore collaborative solutions to strengthen India’s rare disease ecosystem.

With participation from leading medical experts, research institutions, patient advocacy groups, and policymakers, the Rare Diseases Action Summit 2026 served as a critical platform to advance dialogue, strengthen partnerships, and accelerate progress toward improving the lives of people affected by rare diseases.