The Union Health Ministry has designated Kerala’s Sree Avittam Thirunal Hospital (SAT) hospital, Government Medical College, Thiruvananthapuram, as a centre of excellence (CoE) for treating rare diseases, making it the 11th such hospital in the country under the Rare Disease Policy 2021.
The decision was formally taken by the Rare Disease Cell, Union Ministry of Health & Family Welfare (MoHFW) dated 26 December, 2022 pursuant to paragraph 9.1 of the National Policy for Rare Diseases, 2021.
In its official memorandum, the MoHFW stated that Sree Avittam Thirunal Hospital (SAT) hospital, Government Medical College, Thiruvananthapuram, will be a premier tertiary care hospital with facilities for diagnosis, prevention and treatment of rare diseases.
Two months before this announcement, the MoHFW had declared the All lndia lnstitute of Medical sciences (AllMs), Jodhpur as a centre of Excellence (CoE) for Rare Diseases under NPRD, 2021 on October 12, 2022 through this official order.
The other 10 designated CoEs treating rare diseases in the country include All India Institute of Medical Sciences, New Delhi, Maulana Azad Medical College (MAMC), New Delhi, Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Postgraduate Institute of Medical Education and Research (PGIMER), Chandigarh & Center for DNA Fingerprinting & Diagnostics, Hyderabad.
The other five include King Edward (VII) Memorial Hospital and Seth Gordhandas Sunderdas Medical College, Mumbai, Institute of Post Graduate Medical Education and Research, Calcutta, Centre for Human Genetics (CHG), Bangalore, All India Institute of Medical Sciences, Jodhpur and the Institute of Child Health, Egmore, Chennai.
Meanwhile, news reports have claimed that the SAT hospital was selected after it was found to be having ‘excellent facilities for detection, treatment and after care for rare diseases in the inspection carried out by the experts’.
In another related report, The Hindu said that the SAT hospital is setting up a ‘special control room to counsel patients with rare diseases and their families regarding diagnosis and available treatment. Only health workers who have received special training will be appointed at the help desk.’
Registration for rare disease patients at SAT hospital is slated to start from January, 2023, the report said.
NIDAN KENDRAS
In addition to the above Centres of Excellence for Treatment of Rare Diseases, the central government has designated the following hospitals as NIDAN (National Inherited Disorders Administration Kendras) centres to provide genetic testing & counselling services, prenatal testing and diagnosis, management and multidisciplinary care for the benefit of rare disease patients.
Lady Hardinge Medical College (LHMC), Delhi
Nizam’s Institute of Medical Sciences (NIMS), Hyderabad, Telangana
All India Institute of Medical Sciences (AIIMS), Jodhpur
Army Hospital Research & Referral, Delhi
Nil Ratan Sircar (NRS) Medical College and Hospital. Kolkata
