The Union Health Ministry has designated Bhopal AIIMS in Madhya Pradesh as a Centre of Excellence (CoE) for treating rare diseases, making it the 12th 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 November 6, 2023, pursuant to paragraph 9.1 of the National Policy for Rare Diseases, 2021.
In its memorandum, the Ministry of Health & Family Welfare, Government of India (MoHFW), officially designated the inclusion of All India Institute of Medical Sciences (AIIMS), Bhopal, as a CoE for Rare Diseases under the National Policy for Rare Diseases (NPRD), 2021.
The memorandum states that AIIMS, Bhopal, will be a premier government tertiary hospital equipped with facilities for the diagnosis, prevention, and treatment of rare diseases. The responsibilities and activities of the institute will align with the provisions outlined in Para 9.2 of the NPRD, 2021. The directive is effective from the date of the memorandum’s issuance and is approved by the competent authority.
The memorandum is addressed to various departments and authorities, including the Secretary of the Department of Biotechnology, Ministry of Science and Technology, and the Director of AIIMS, Bhopal.
Under Para 9.2 of the National Policy for Rare Diseases (NPRD), 2021, the Centre of Excellence discharges the following responsibilities and activities:
- Education & Training at all levels
- Screening – Antenatal, neonatal (specified disorders), High-risk screening (Both antenatal & in newborns and children)
- Diagnostics- Cytogenetic, molecular, Metabolic
- Prevention by prenatal screening & diagnosis
- Research in the area of low-cost diagnostics & therapeutics.
Here are the other 11 designated CoEs treating rare diseases in the country. These CoEs have dedicated rare disease committees:
- All India Institute of Medical Sciences, New Delhi
- Maulana Azad Medical College (MAMC), New Delhi
- Sanjay Gandhi Postgraduate Institute of Medical Sciences, Lucknow, Uttar Pradesh
- Postgraduate Institute of Medical Education and Research(PGIMER), Chandigarh, Punjab/Haryana
- Center for DNA Fingerprinting & Diagnostics, Hyderabad, Telangana
- King Edward (VII) Memorial Hospitaland Seth Gordhandas Sunderdas Medical College, Mumbai, Maharashtra
- Institute of Post Graduate Medical Education and Research, Calcutta, West Bengal
- Centre for Human Genetics(CHG), Bangalore, Karnataka
- All India Institute of Medical Sciences, Jodhpur, Rajasthan
- Institute of Child Health, Egmore, Chennai, Tamil Nadu
- Sree Avittam Thirunal Hospital (SAT),Thiruvananthapuram, Kerala
“The CoE status will empower AIIMS, Bhopal to serve as a regional hub with facilities for diagnosing, preventing, and treating rare diseases. It will enable patients suffering from rare diseases to register for financial support for treatment from the government and other voluntary organisations,” writes Times of India in its report.
Nidan Kendras
Besides the 12 CoEs, the Department of Biotechnology (DBT) has established 5 Nidan Kendras under the Unique Methods of Management and treatment of Inherited Disorders (UMMID) project for genetic testing and counseling of rare diseases. These centers offer screening, genetic testing, and counseling services.
They include:
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
