Andhra Pradesh to set up Rare Diseases Registry, Centre of Excellence under new policy
Vijayawada- The Andhra Pradesh government is set to formulate a dedicated policy to provide free diagnostic tests, specialised treatment, and financial assistance to patients with rare diseases and their families.
Under this initiative, the state government plans to create a 'Rare Diseases Registry', provide specialised training to doctors, and establish three referral centres as well as a 'Centre of Excellence'.
This policy is being developed in alignment with the National Policy for Rare Diseases-2021. Its objective is to provide much-needed relief to patients and their families, who often face immense medical and financial challenges.
According to the TNIE news report, Andhra Pradesh Health Minister Y Satya Kumar Yadav announced on Saturday that the initiative is being undertaken under the guidance of Chief Minister N. Chandrababu Naidu and with the support and suggestions of IT and Education Minister Nara Lokesh.
He also expressed confidence that the Central Government would extend all possible assistance to the state in implementing the proposed policy.
Additionally, the Health Minister stated that during a recent visit to New Delhi, he had discussed this issue with Prime Minister Narendra Modi and officials from the Indian Council of Medical Research (ICMR).
The main focus of the discussion was to formulate a comprehensive policy, conduct research into the causes of rare diseases, and take necessary measures to improve diagnostic and treatment facilities.
Furthermore, the Minister stated that patients suffering from diseases such as muscular dystrophy, spinal muscular atrophy, cystic fibrosis, lysosomal storage disorders, and Fanconi anaemia often face immense difficulties due to high treatment costs and a lack of diagnostic facilities.
Meanwhile, Dr Vishnuvardhan, Director of Medical Education, stated that teaching hospitals in Visakhapatnam, Tirupati, Vijayawada, and Kakinada are being considered for these facilities, and one of them is likely to be upgraded into a 'Centre of Excellence'.
