State Plans Rare Diseases Registry, Referral Centres and Centre of Excellence
In a major step towards strengthening healthcare support for patients suffering from rare diseases, the Andhra Pradesh Government is preparing to introduce a dedicated Rare Disease Policy that will provide free diagnostic tests, specialised treatment facilities, and financial assistance to affected patients and their families.
The proposed policy is being developed in line with the National Policy for Rare Diseases (NPRD)-2021 and aims to address the significant medical, social, and financial challenges faced by individuals living with rare disorders across the state.
Focus on Better Diagnosis, Treatment and Research
As part of the initiative, the state government plans to establish a comprehensive Rare Diseases Registry, create three specialised referral centres, and upgrade one medical institution into a Centre of Excellence for rare disease care. The government will also provide specialised training to doctors to improve diagnosis and treatment outcomes.
Speaking on the initiative, Andhra Pradesh Health Minister Y. Satya Kumar Yadav said the policy is being formulated under the guidance of Chief Minister N. Chandrababu Naidu and with the support of IT and Education Minister Nara Lokesh. He expressed confidence that the Central Government would extend all necessary support for the successful implementation of the programme.
Discussions Held with PM Modi and ICMR Officials
The Health Minister revealed that the issue was recently discussed during his visit to New Delhi, where he held consultations with Prime Minister Narendra Modi and officials of the Indian Council of Medical Research (ICMR).
According to the Minister, discussions focused on creating a comprehensive policy framework, promoting research into the causes of rare diseases, and strengthening diagnostic and treatment infrastructure across Andhra Pradesh.
Relief for Patients Facing High Treatment Costs
The proposed policy is expected to benefit patients suffering from rare disorders such as muscular dystrophy, spinal muscular atrophy (SMA), cystic fibrosis, lysosomal storage disorders, and Fanconi anaemia. These conditions often require lifelong treatment and place a heavy financial burden on families due to expensive therapies and limited access to specialised healthcare services.
The government aims to reduce this burden by ensuring access to affordable diagnosis, advanced treatment options, and financial support mechanisms.
Teaching Hospitals Under Consideration
Dr Vishnuvardhan, Director of Medical Education, stated that teaching hospitals located in Visakhapatnam, Tirupati, Vijayawada, and Kakinada are being considered for the proposed facilities. One of these institutions is expected to be upgraded as a Centre of Excellence dedicated to rare disease management and research.
The initiative is expected to significantly improve healthcare accessibility for rare disease patients in Andhra Pradesh while enhancing research, early diagnosis, and specialised treatment capabilities across the state.
