The AIIMS-Delhi received more than Rs 23 crore in funding from the Centre for treatment of rare diseases in the last five years, according to information received through the RTI Act.
Overall, the Centre has released around Rs 90 crore in funds to several Centres of Excellence (CoE) for treatment of rare diseases since 2019, the information received under the Right to Information (RTI) Act showed.
The Delhi All India Institute of Medical Sciences, one of the eight CoEs for treatment of rare diseases in the country, said it received Rs 1 crore in 2019, nil in 2020, Rs 4.10 crore in 2021, Rs 7.12 crore in 2023, and Rs 10.93 crore in 2023.
The Department of Health and Family Welfare said as per records maintained in the Rare Disease Cell, the government released Rs 1.30 crore in 2019-20, Rs 10 crore in 2020-21, Rs 3.15 crore in 2021-21, Rs 34.99 crore in 2022–23, and Rs 40 crore in 2023–24 (till date).
The RTI query was filed by Noida-based social activist Amit Gupta.
According to the information, AIIMS-Delhi treated 22 rare disease patients in 2021 and 12 in 2022 from the central funds.
According to the information, these 34 patients were treated for rare diseases such as MPS II, Gaucher, Atypical HUS, DMD, Tyrosinemia type 1, Adrenoleukodystrophy, Larons Syndrome, Griscelli syndrome type 2, and severe combined immunodeficiency syndrome.
The rare disorders given treatment cover by the Centre are Tyrosinemia type 1, Gaucher, MPS 1, MPS 2, DMD, Atypical HUS, Adrenoleukodystrophy, Larons Syndrome, Omenn Syndrome, Severe Combined Immunodeficiency Syndrome (SCID), Griscelli Syndrome type-2, X-Linked Lymphoproliferative Disorder, Turner Syndrome, Multiple Pituitary Hormone Deficiency, Growth Hormone Resistance, Nephropathic cystinosis, Shwachman Diamond syndrome, Prader willi Syndrome, Congenital hyperinsulinismc, Pompe (IOPD), and TK2 Deficiency.
