Parliament Question: Delay in NPRD Assistance

GOVERNMENTOFINDIA MINISTRYOFHEALTH AND FAMILYWELFARE DEPARTMENTOFHEALTH AND FAMILYWELFARE LOK SABHA UNSTARRED QUESTION No. 5587 TOBE ANSWERED ON27th MARCH 2026 DELAYINNPRD ASSISTANCE 5587.DR. BYREDDYSHABARI: Will the Minister of HEALTHANDFAMILYWELFARE be pleased tostate: (a) the mechanism in place to ensure timely follow-up, communication and guidance to patients after completing registration under the National Policy of Rare Diseases (NPRD) through nodal officers andCentresof Excellence(CoEs); (b) the details of representations received regarding delays in processing applications and lackof communication afterregistration andthe actiontakenby the Government thereon;and (c) whether the Government proposes to establish additional Centres of Excellence for Rare Diseases so thatpatients donot have totravellongdistances for consultationandtreatment in the country, particularlyinAndhra Pradeshandif so, the detailsthereof? ANSWER THE MINISTER OFSTATE IN THE MINISTRYOFHEALTH AND FAMILY WELFARE (SHRIPRATAPRAO JADHAV) (a) Health being a State subject, the primary responsibility of providing healthcare services is that of the State Governments. However, to mitigate the challenges posed by rare diseases inIndia, the National Policyfor Rare Diseases (NPRD), 2021provides financial and medical assistance for treatment of patients suffering from identified rare diseases in the designated Centers of Excellence (CoEs). A dedicated Rare Disease Committee (RDC) has been constituted in each CoE with the Nodal Officer for Rare Diseases being the Member SecretaryoftheRDC.The NodalOfficerandtheRDC areresponsiblefor regularcounselling, scheduling Out Patient Department (OPD) visits, monthly reviews and providing updates to ensure proper guidance topatients. (b) In case of representations received regarding delays in processing applications, the concernedCoEsare directed tocomplywith the extantguidelinesof the NPRD. (c) The Government has been identifying more CoEs across the country to increase accessibility and availability of treatment. Since the inception of NPRD, the number of CoEs has increased from 8 to 15, including 2 CoEs in the North-east India so that the patients do not have to travel long distances for consultation and treatment. Centre for DNA Fingerprinting and Diagnostics (CDFD, Hyderabad), Centre for Human Genetics (CHG, Bengaluru)and Institute Of Child Health andHospital for Children(ICH & HC, Chennai)are the CoEswhich are inclose proximity for cateringpatientsfrom Andhra Pradesh. *****