AIIMS-Delhi Receives ₹23 Crore in Funding for Rare Disease Treatment
Summary:
- The All India Institute of Medical Sciences (AIIMS) in Delhi has received over ₹23 crore in funding from the Centre for the treatment of rare diseases in the last five years, according to information obtained through the Right to Information (RTI) Act.
- This funding is part of the ₹90 crore released by the Centre to various Centres of Excellence (CoE) for the treatment of rare diseases since 2019.
- AIIMS-Delhi, one of the eight CoEs for rare disease treatment in India, received ₹1 crore in 2019, no funding in 2020, ₹4.10 crore in 2021, ₹7.12 crore in 2022, and ₹10.93 crore in 2023.
- The Department of Health and Family Welfare released ₹1.30 crore in 2019-20, ₹10 crore in 2020-21, ₹3.15 crore in 2021-22, ₹34.99 crore in 2022-23, and ₹40 crore in 2023-24 (till date) for rare disease treatment.
- AIIMS-Delhi treated 22 rare disease patients in 2021 and 12 in 2022 using these funds. The treated patients had 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 Centre provides financial assistance of up to ₹50 lakh to patients suffering from any category of rare diseases for treatment in any of the CoEs for rare diseases under the National Policy for Rare Diseases.
- The National Policy for Rare Diseases was launched in March 2021, and rare diseases have been categorized into three groups based on the type of treatment required.
- Eight CoEs and five nidan kendras have been established for the diagnosis, prevention, and treatment of rare diseases, as well as genetic testing and counseling services.
The AIIMS-Delhi received more than ₹23 crore in funding from the Centre for treatment of rare diseases in the last five years, according to information received through RTI Act.
The All India Institute of Medical Sciences (AIIMS) in Delhi has received more than ₹23 crore in funding from the Centre for the treatment of rare diseases in the last five years, according to information obtained through the Right to Information (RTI) Act. This funding is part of the ₹90 crore released by the Centre to several Centres of Excellence (CoE) for the treatment of rare diseases since 2019.
AIIMS-Delhi, one of the eight CoEs for the treatment of rare diseases, stated that it received ₹1 crore in 2019, no funding in 2020, ₹4.10 crore in 2021, ₹7.12 crore in 2022, and ₹10.93 crore in 2023. The Department of Health and Family Welfare released ₹1.30 crore in 2019-20, ₹10 crore in 2020-21, ₹3.15 crore in 2021-22, ₹34.99 crore in 2022-23, and ₹40 crore in 2023-24 (till date) for the treatment of rare diseases.
According to the information received, AIIMS-Delhi treated 22 rare disease patients in 2021 and 12 in 2022 using the central funds. These patients were suffering from 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 Centre provides financial assistance of up to ₹50 lakh to patients suffering from any category of rare diseases for treatment in any of the Centres of Excellence for rare diseases under the National Policy for Rare Diseases (NPRD). The policy, launched in March 2021, categorizes rare diseases into three groups based on the type of treatment required.
The Minister of State for Health and Family Welfare, Dr. Bharati Pravin Pawar, informed the Lok Sabha that eight CoEs and five nidan kendras have been identified for the diagnosis, prevention, and treatment of rare diseases, as well as for genetic testing and counseling services.
In conclusion, AIIMS-Delhi has received significant funding for the treatment of rare diseases, contributing to the overall funding of ₹90 crore provided by the Centre to various Centres of Excellence. This funding plays a crucial role in treating patients suffering from rare diseases and improving their quality of life.
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