States » SouthPosted at: Oct 4 2026 6:17PM


Comprehensive rare disease policy needed: Dr Naresh Purohit

Hyderabad, Oct 4 (UNI) A comprehensive policy framework for rare diseases, coupled with improved patient care and early diagnosis, is the need of the hour, Dr Naresh Purohit, Executive Member of the Indian Medical Academy for Preventive Health said on Sunday.
Dr Purohit said rare diseases were debilitating conditions requiring immediate attention and urged the Centre to strengthen the implementation of the National Policy for Rare Diseases (NPRD).
In a letter addressed to union Health and Family Welfare Minister J P Nadda, Dr Purohit said that according to the World Health Organisation (WHO), rare diseases typically affect fewer than one in 1,000 people.
In India, an estimated 70 million people are affected by around 450 rare diseases, including Spinal Muscular Atrophy (SMA), he said.
Dr Purohit, a certified ICMR research scholar, said SMA was a rare genetic disorder characterised by progressive loss of motor neurons, leading to severe muscle weakness and potentially life-threatening complications.
Patients with SMA often have limited or no access to treatment, he said, stressing the need for greater awareness, support and effective strategies for early identification and intervention.
Despite the introduction of the NPRD in 2021, several challenges relating to SMA and other rare diseases persisted, Dr Purohit said.
The policy seeks to reduce the incidence and prevalence of rare diseases through awareness campaigns, screening and counselling programmes.
He said the Centre had established 11 Centres of Excellence (CoEs) across the country to provide counselling, diagnosis, management and comprehensive multidisciplinary care for rare disease patients.
However, utilisation of funds by the CoEs had not been encouraging, he added.
Several CoEs also lacked adequate infrastructure and trained personnel for genetic diagnostics, counselling and advanced therapies, Dr Purohit said.
"India carries a high burden of rare diseases due to its large population and socio-economic factors. Ensuring the right policies for rare disease patients is not just a matter of healthcare, but a commitment to compassion and equity," he said.
Dr Purohit called for urgent implementation of the NPRD and said a robust policy framework, improved patient care and better access to treatment could reduce the burden on patients and their families.
He said an estimated 70 million people in India were living with rare diseases and that available treatments and medical care were often prohibitively expensive.
With current diagnostic tools, only about 40 per cent of patients receive a diagnosis, while the remaining 60 per cent remain undiagnosed even after undergoing comprehensive investigations, as their conditions may not yet have been identified, he said.
The resulting "diagnostic odyssey" could continue for decades or even a lifetime, with patients consulting multiple specialists and undergoing repeated investigations without receiving a definitive diagnosis, Dr Purohit said.
Patients in rural and remote areas face an additional burden as they have to travel to cities for specialised consultations, he said, adding that the prolonged diagnostic process not only increases financial costs but also causes significant emotional distress to patients and their families.
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