- Why in news
- On 5 May 2026 the Union Health Ministry inaugurated a 2-day National Conference on Rare Diseases in New Delhi (5–6 May) to review progress under the National Policy for Rare Diseases, 2021.
- What it is
- The National Policy for Rare Diseases, 2021 is the Union Health Ministry's framework to prevent rare diseases and make treatment available and affordable. It works through Centres of Excellence, which are tertiary hospitals, and gives financial help to patients with identified rare diseases. It groups rare diseases into three categories by treatment needs and cost.
- Origin of the policy
- The need was first flagged in the National Health Policy, 2017. The National Policy for Rare Diseases was launched in 2021.
- Implementation through CoEs
- The policy is implemented through Centres of Excellence, which are premier tertiary hospitals. Their number has grown from 8 to 15, including two in the North-East.
- Financial assistance
- Assistance for patients across all categories was raised from ₹20 lakh to ₹50 lakh in August 2022.
- Three categories
- The policy sorts rare diseases into three groups based on treatment requirements and cost implications.
- UMMID and NIDAN Kendras
- The UMMID initiative, through its NIDAN Kendras, is becoming operational with genetic counselling being strengthened. About 1,800 patients have received treatment support under the policy.
- Customs duty relief
- Life-saving drugs are exempt from basic customs duty, and the recent Union Budget expanded this.
Don’t confuse with National Health Policy, 2017 vs National Policy for Rare Diseases, 2021: The 2017 health policy first flagged rare diseases. The 2021 policy is the dedicated framework with CoEs and financial aid.
Don’t confuse with DHR vs ICMR: The Department of Health Research is the ministry-level department. ICMR is the research council it oversees, and its Director General also serves as DHR Secretary.
Schemes: 52 Prelims questions since 2013, 10 in Prelims 2026 alone. They test features, the period and who funds it. In Mains, 33 news-triggered questions, mostly GS3.
Why it matters
- Gives financial protection and a structured care network to patients with costly, mostly genetic, childhood-onset conditions.
- Builds capacity in genomics, screening and indigenous therapy development, in line with Right to Health goals.
Problems
- Therapies remain very costly, and even ₹50 lakh per patient may not cover them.
- Low awareness among the public and doctors causes delayed or wrong diagnosis; only 15 CoEs serve the whole country.
Way forward
- Promote indigenous production of affordable drugs, repurposed drugs and gene therapy through ICMR, DBT and CSIR.
- Expand screening, genetic counselling and awareness workshops to more districts, and integrate rare disease services across levels of healthcare.
Put in your answer
Centres of Excellence: Number of CoEs has risen from 8 to 15, including two in the North-East.
Financial aid: Assistance was raised from ₹20 lakh to ₹50 lakh in August 2022.
Repurposed drugs: Six repurposed drugs have been identified and clinical efforts are being started for their use in rare diseases.
- 2015Mains GS4 · Q11Ethics of developing costly drug for prevalent tribal liver disease
- 2026Mains GS1 · Q9Define disability and justify an inclusive policy framework in India.
UPSC’s own questions that come close to this issue, from our Prelims and Mains banks.
No practice question for this one; the card may still help an answer. Why: Lasting health policy with Centres of Excellence; Prelims takes schemes often (52 of 327), but this release gives few testable facts and no debate.
Worth revising until Prelims 2027: most news questions come within two years of the event.