Parliament Question: Centres of Excellence for Rare Diseases

GOVERNMENTOFINDIA MINISTRYOFHEALTH AND FAMILYWELFARE DEPARTMENTOFHEALTH AND FAMILYWELFARE LOK SABHA UNSTARREDQUESTION NO. 2165 TO BE ANSWERED ON 31STJULY2026 CENTRES OFEXCELLENCE FORRARE DISEASES †2165. SHRI TANUJ PUNIA: Will the Minister of HEALTHANDFAMILYWELFARE be pleased tostate: (a) the total number of medical institutions currently designated as 'Centres of Excellence' (CoEs) for the treatmentand research of rare diseases inthe country, State-wise; (b) the total budgetary funds allocated and released to these Centers of Excellence during the last two years for the treatment of eligible patients under the National Policy for Rare Diseases; (c) whether the Government is aware that patients from the North-Eastern region and several backward states are forced to undertake long-distance travel to AIIMS Delhi or other metropolitan cities for treatment due to the limited number of such centres and if so, the detailsthereof; and (d) the roadmap formulated by the Government to integrate all AIIMS institutions across the countryintothis'Centresof Excellence' network? ANSWER THE MINISTER OFSTATE IN THE MINISTRYOFHEALTH AND FAMILY WELFARE (SHRIPRATAPRAO JADHAV) (a) The number of Centers of Excellence (CoEs) under the National Policy for Rare Diseases (NPRD) hasdoubled from 8 since itsinception in 2021 to16, as on date. The State- wise list of CoEsisplacedat annexure. (b) Total budgetary funds released under the NPRD, 2021 during the last two years are approximately₹177.14cr. (c)and(d) The Government establishes new CoEs from time to time to improve geographical accessibility to rare disease care, subject to the availability of the requisite infrastructure and human resources, based on the recommendations of the Technical Committee. Toimprove the rare disease treatment accessibility inthe North-Eastern regionof the country, two CoEs have also been established at Regional Institute of Medical Sciences, Imphal (Manipur) andAssam Medical College andHospital, Dibrugarh (Assam).Annexure List of Centersof Excellences (CoEs) for Rare Diseases underthe National Policyfor Rare Diseases (NPRD), 2021 S.No. Name of theInstitute State/UT 1. All India Institute of Medical Sciences,New Delhi Delhi 2. Maulana Azad Medical College,New Delhi SanjayGandhi Post Graduate Institute of Medical Sciences, 3. Uttar Pradesh Lucknow Post Graduate Institute of Medical EducationandResearch, 4. Chandigarh Chandigarh Centre for DNAFingerprinting & Diagnostics with Nizam’s 5. Telangana Institute of Medical Sciences,Hyderabad 6. King Edward Medical Hospital, Mumbai Maharashtra 7. All India Institute of Medical Science,Nagpur Institute of Post-Graduate Medical EducationandResearch, 8. West Bengal Kolkata Centerfor Human Genetics(CHG) with Indira Gandhi 9. Karnataka Hospital, Bengaluru Institute of Child HealthandHospital for Children(ICH & 10. TamilNadu CH), Chennai 11. All India Institute of Medical Sciences(AIIMS), Jodhpur Rajasthan SreeAvittam ThirunalHospital (SAT), Government Medical 12. Kerala College,Thiruvananthapuram 13. All India Institute of Medical Sciences,Bhopal Madhya Pradesh 14. Regional Institute of Medical Sciences,Imphal Manipur 15. Assam Medical College andHospital, Dibrugarh Assam 16. All India Institute of Medical Sciences,Patna Bihar *****