Rare Disease Day 2026:
Rare Disease Day is observed globally on 28th February (or 29th February in leap years, symbolically the rarest day) to underscore the unique challenges faced by this community.
- It aims to achieve equity in social opportunities, healthcare, and access to diagnosis and therapies for rare disease patients.
- Established in 2008, it is coordinated by EURORDIS (European Organisation for Rare Diseases) in partnership with over 70 national alliance patient organisations.
Rare Diseas - There is no single universal definition of a rare disease. It is primarily determined by prevalence, with a global/emerging consensus defining it as affecting ≤ 1 in 2,000 persons in a WHO-defined region.
- A significant 50–75% of these conditions manifest during childhood or at birth, and approximately 80% are of genetic origin (e.g., Lysosomal storage disorders).
- The remaining include rare cancers, autoimmune conditions, and infectious diseases.
- Globally, there are 6,000–10,000 identified rare diseases, affecting an estimated 300–450 million people. Critically, ~95% of rare diseases currently lack approved curative treatments, posing a major public health challenge.
- India lacks a formal prevalence-based definition due to limited epidemiological data. Instead, the National Policy for Rare Diseases (NPRD), 2021, categorizes (Group 1, Group 2 and Group 3) disorders based on treatability and clinical experience, not strict numerical thresholds.
Despite the lack of a definition, an estimated 72–96 million people in India are affected by rare diseases. - Under the NPRD 2021, financial support of up to Rs. 50 lakhs is provided to patients suffering from any of the 63 included rare diseases at designated Centres of Excellence.
- Under the Union Budget 2026–27, 7 additional rare diseases have been included for exemption from import duties on personal imports of drugs, medicines, and food for special medical purposes.
- Rare Diseases were included as a focus area under the Production Linked Incentive (PLI) Scheme for Pharmaceuticals.
