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Huntington's: India Fights for Rare Disease Registry
9 May
Summary
- India lacks a registry for Huntington's disease, hindering patient visibility.
- The Huntington Disease Society advocates for its inclusion as a rare disease.
- Gene therapy research shows promise for future Huntington's treatments.
India currently lacks a registry for Huntington's disease, a rare hereditary neurodegenerative disorder. This absence stems from its exclusion from the official list of rare diseases, creating a significant hurdle for affected individuals and their families seeking support and recognition.
The Huntington Disease Society, comprised of affected families, doctors, and researchers, convened to discuss treatment advancements and accessibility in India. Unlike many paediatric rare diseases, Huntington's symptoms typically manifest between 30-50 years of age, progressively worsening over 15-20 years.
The recent expansion of the National Policy for Rare Diseases (NPRD), 2021, from 55 to 63 diseases, has instilled hope for the society. They are urging the Union health minister to recognize Huntington's under the NPRD and ensure coverage under the Pradhan Mantri Jan Arogya Yojana (PMJAY).
Recognition would enable the Indian Council of Medical Research (ICMR) to establish a registry, a critical step for quantifying patients and aiding research. Institutions like NIMHANS and AIIMS have treated numerous patients, yet their invisibility persists without a registry. The society also calls for regional centers of excellence to improve treatment access.
Senior scientist Dr. Mohammed Faruq highlighted gene therapy as a promising avenue for developing future treatments through consistent research.
