The Union Ministry of Health and Family Welfare launched a two-day National Conference on Rare Diseases in New Delhi on May 5-6. This event marks a significant advancement in India’s efforts to address the complexities surrounding rare diseases. The conference aims to gather essential stakeholders to discuss the associated challenges, promote advancements, and improve strategies for managing rare diseases throughout the country.

Key Discussions and Policy Framework

During her address, Union Health Secretary Punya Salila Srivastava emphasised the importance of understanding the concerns of various stakeholders in the rare disease sector. The conference aims to generate innovative ideas to enhance the overall care for patients with rare conditions. She noted that rare diseases were first acknowledged in the National Health Policy of 2017 and were later formalised through the National Policy for Rare Diseases in 2021, establishing India as a leader in creating a structured policy framework in this area.

Srivastava further mentioned that financial support under the policy has been increased to ₹50 lakh, improving patients’ access to essential treatments. The government has taken measures to alleviate the financial burden of high-cost therapies by exempting certain life-saving medications from basic customs duty. Additionally, she encouraged participants to suggest more treatments for this exemption list, highlighting a collaborative approach to expand access and affordability.

To enhance public awareness, she stressed the need for campaigns and capacity-building workshops in various states. Participants are urged to identify additional districts for outreach and education initiatives, thus promoting understanding and awareness regarding rare diseases across the country.

Innovations and Research Progress

Dr. Rajiv Bahl, Secretary of the Department of Health Research and Director General of the Indian Council of Medical Research (ICMR), provided insights into the current state of rare disease research. He highlighted advancements in drug repurposing and gene therapy, noting that India is making significant strides toward developing advanced treatment options. Bahl mentioned emerging technologies such as CAR-T cell therapy as part of these advancements, indicating a positive trend in the country’s approach to rare diseases.

Complementing these insights, Director General of Health Services Dr. Sunita Sharma underscored the need for reinforcing healthcare systems to ensure early diagnosis and integrated care networks. She stated that timely treatment and continuity of care are critical for patients afflicted with rare diseases. Strengthening these systems will be imperative to ensure that affected individuals receive the necessary support and medical attention.

The conversation around patient care also delved into the role of genetic testing and informed clinical management as critical components for early diagnosis and prevention strategies. Initiatives such as the UMMID programme and NIDAN Kendras are vital in bolstering genetic counselling services, with about 1,800 patients benefiting from treatment support thus far. These measures signify a comprehensive approach to enhancing care for those affected by rare conditions.

Future Directions

The discussions at the conference suggest a forward-thinking approach involving various sectors, including regulatory bodies and other government ministries, to improve access to therapies. This collaborative effort aims to provide comprehensive care and expand the available resources and treatments for rare diseases. By fostering innovation and addressing the unique challenges posed by rare conditions, the Government is striving to create a more inclusive healthcare environment for all patients.

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