The Union Ministry of Health and Family Welfare on Tuesday inaugurated the 2-day National Conference on Rare Diseases in New Delhi, being held on 5th and 6th May, marking a significant step towards strengthening India’s response to the challenges posed by rare diseases.
Addressing the gathering, Union Health Secretary Punya Salila Srivastava, stated that the core objective of organising this conference is to understand the challenges faced by stakeholders, encourage innovations, and generate new ideas for strengthening the management of rare diseases in the country.
She noted that the need for addressing rare diseases was first highlighted in the National Health Policy, 2017, and was subsequently institutionalized through the launch of the National Policy for Rare Diseases, 2021, which has positioned India among countries with a comprehensive national framework for rare diseases.
She highlighted that the policy is implemented through Centres of Excellence (CoEs) which are premier tertiary hospitals across the country. The number of CoEs expanded from 8 to 15 over the years including two CoEs in North-East India, strengthening the national architecture for clinical care and support.
The Union Health Secretary also informed that the financial assistance under the policy has been progressively enhanced to Rs 50 lakh, enabling improved access to treatment for patients suffering from identified rare diseases.
Acknowledging the rising cost of therapies, she informed that the Government has taken proactive steps to exempt life-saving drugs from basic customs duty, with further expansion announced in the recent Union Budget. She encouraged stakeholders to suggest additional drugs that may be considered for such exemptions.
She emphasised that awareness generation and capacity-building workshops are being conducted across States and urged participants to identify districts where such initiatives can be further expanded, assuring full support from the Ministry.
Stressing the importance of early diagnosis and prevention, she highlighted the role of genetic analysis, early detection, and informed clinical management. She noted that rare diseases require collective and sustained efforts from all stakeholders, and that progress in this domain is only possible through strong collaboration.
She further informed that the Unique Methods for Management of Inherited Disorders (UMMID) initiative, through its NIDAN Kendras, is becoming operational, with genetic counselling services being strengthened, and approximately 1,800 patients having already received treatment support under the rare disease policy. She also acknowledged the collaborative efforts with regulatory bodies and other Ministries to streamline processes and improve access to therapies.
Expressing appreciation for the contributions of the Indian Council of Medical Research, she highlighted its role in advancing indigenous research and development of therapies for rare diseases.
Concluding her address, she emphasised the importance of documenting ongoing efforts and learnings during the two-day conference and expressed confidence that the deliberations will further strengthen collective resolve, enhance momentum, and contribute to improving the lives of patients affected by rare diseases.
On the occasion, Secretary, Department of Health Research (DHR) and Director General, Indian Council of Medical Research, Dr. Rajiv Bahl, reflected on the significant progress made in the field of rare diseases over the past three decades.
He noted that in the 1990s, identifying a patient with a suspected rare disease often led to a sense of helplessness, as diagnosis was extremely difficult and treatment options were virtually unavailable.
Today, while even financial support of Rs 50 lakh per patient may seem insufficient given the high cost of therapies, it represents remarkable progress that the country is now able to meaningfully support children affected by rare diseases.
He emphasised that this evolution reflects a broader shift in healthcare priorities, where attention is not only given to common diseases but also to those affected by rare, often genetic conditions.
He described the Government of India’s rare disease programme as a source of hope for thousands of children and acknowledged the critical role played by Centres of Excellence in delivering care and advancing treatment.