There is no registry for Huntington’s disease, a rare neurodegenerative hereditary disorder, because it is not listed as a rare disease. And without a registry to officially quantify how many suffer from it, patients and their families are struggling to get it included as a rare disease. Caught in this chicken-and-egg situation, the Huntington Disease Society, India – formed by families of persons suffering from the disease, doctors and researchers – gathered in the Institute of Genomics and Integrative Biology to discuss advances in treatment options and ways of making them accessible to patients in India.Unlike most rare diseases included in the official list which are paediatric diseases, the symptoms of Huntington’s disease, caused by a genetic mutation inherited from a parent, typically appear between 30-50 years of age and the symptoms progressively worsen over 15-20 years. The National Policy for Rare Diseases (NPRD), 2021, was updated in Aug 2024 when the list of diseases listed under it was expanded from 55-63 with diseases such as Laron syndrome and Glanzmann Thrombasthenia being added. This has made the Huntington Disease Society hopeful.”Recognising Huntington’s Disease under NPRD and ensuring PMJAY coverage will reduce catastrophic out-of-pocket expenditure and provide long overdue policy visibility,” stated the society’s letter to the Union health minister pointing out that the disease imposed lifelong multidimensional burden on affected individuals and families.”At least if the condition gets added, the ICMR can start a registry. NIMHANS has treated more than 500 patients in more than a decade. AIIMS must have treated a similar number. But without a registry, the patients remain invisible to the system. Such a registry will also help in research into the disease and its treatment modalities. We also need regional centres of excellence so that it becomes easier for patients to seek treatment,” said Venkateshwara Rao Koushik, chairman of the society, whose wife is afflicted.Dr Mohammed Faruq, senior principal scientist at IGIB, held out hope for treatment to be developed through consistent research into gene therapy, which has shown promise.End of ArticleFollow Us On Social MediaVideosVijay Claims Support Of 118 MLAs, Likely To Take Oath As Tamil Nadu CM TomorrowTN Political Crisis Deepens: Stalin Pushes Governor For Swift ActionAir India AI 171 Crash Probe In Final Stage, Report Likely Within A MonthTwo States, Two Big Winners: Suvendu Gets Bengal, Vijay Eyes Tamil NaduShah Hails BJP’s Historic Bengal Victory, Credits People’s Faith In ModiBJP Names Suvendu Adhikari As West Bengal’s First BJP Chief MinisterViral MLA Preference List Shows KC Venugopal Claiming Majority Support As Kerala CMTMC Leader Kunal Ghosh Says Bengal Violence Must Be Viewed From Two Different PerspectivesCongress-DMK Split And TVK Support Trigger Fresh INDIA Alliance TensionsPakistan’s Bizarre ‘Why Speak English?’ Reaction After India Details Op Sindoor Strikes123PhotostoriesThe Parenting Style of Every Zodiac Sign Mom5 Incredible animals with no cordsThink crocodiles are just dangerous? These 10 facts reveal how unsettling they really areHow to make Raw Mango Dal Fry for summer dinner at homeFrom Ananya Panday to Bhavitha Mandava: How Indian girls are taking over Chanel’s fashion worldPersonality test: How you make a fist reveals if you are focused, a perfectionist, or observantToo much cardio after 40? Why women’s bodies may respond differently from men’sDo common mice found in homes and gardens can spread hantavirus7 things parents of highly confident children teach them differentlySuccess quote of the day by Sachin Tendulkar: “The key to handling pressure situations is to…”123Hot PicksSBI Q4 resultsThane- Navi Mumbai corridorMaharashtra SSC ResultPune child rape-murder casePerambur election resultIndia-New Zealand FTASugarcane price hikeTop TrendingTamil nadu government formationVaibhav SooryavanshiTamil Nadu Class 12 Result 2026Maharashtra Board SSC Result 2026Mumbai Watermelon Death CaseDelhi Capital vs KKR IPL MatchWBBSE Madhyamik Result 2026Salil AnkolaDaniil Medvedev WifeBan vs Pak
There is no registry for Huntington’s disease, a rare neurodegenerative hereditary disorder, because it is not listed as a rare disease. And without a registry to officially quantify how many suffer from it, patients and their families are struggling to get it included as a rare disease. Caught in this chicken-and-egg situation, the Huntington Disease Society, India – formed by families of persons suffering from the disease, doctors and researchers – gathered in the Institute of Genomics and Integrative Biology to discuss advances in treatment options and ways of making them accessible to patients in India.Unlike most rare diseases included in the official list which are paediatric diseases, the symptoms of Huntington’s disease, caused by a genetic mutation inherited from a parent, typically appear between 30-50 years of age and the symptoms progressively worsen over 15-20 years. The National Policy for Rare Diseases (NPRD), 2021, was updated in Aug 2024 when the list of diseases listed under it was expanded from 55-63 with diseases such as Laron syndrome and Glanzmann Thrombasthenia being added. This has made the Huntington Disease Society hopeful.“Recognising Huntington’s Disease under NPRD and ensuring PMJAY coverage will reduce catastrophic out-of-pocket expenditure and provide long overdue policy visibility,” stated the society’s letter to the Union health minister pointing out that the disease imposed lifelong multidimensional burden on affected individuals and families.“At least if the condition gets added, the ICMR can start a registry. NIMHANS has treated more than 500 patients in more than a decade. AIIMS must have treated a similar number. But without a registry, the patients remain invisible to the system. Such a registry will also help in research into the disease and its treatment modalities. We also need regional centres of excellence so that it becomes easier for patients to seek treatment,” said Venkateshwara Rao Koushik, chairman of the society, whose wife is afflicted.Dr Mohammed Faruq, senior principal scientist at IGIB, held out hope for treatment to be developed through consistent research into gene therapy, which has shown promise.
