Rare Diseases

June 23, 2020 1:26 pm Published by Leave your thoughts

A disease that occurs infrequently is generally considered a rare diseases (RD). The landscape of rare diseases is constantly changing, as there are new rare diseases and conditions being identified and reported regularly in medical literature. 80% of the rare diseases are genetic in origin and disproportionately affect children. It has been estimated that nearly 50% of reported RDs occur in children, 30% of RDs patients die before the age of 5 years, and 12% of them die between 5 and 15 years of age.

With the support of Takeda, Mamta Health Institute for Mother and Child has implemented a project in the state of Uttar Pradesh, focusing on rare diseases of childhood since November 2021. This was done in collaboration with the UP Chapter of Indian Academy of Pediatrics and the Medical Education department of Uttar Pradesh. As part of this project, the team is strengthening the health system by supporting notified CoE at SGPGI Lucknow aligned with the National Rare Disease Policy 2021.  Mamta-HIMC UP serves as the Technical Support Unit (TSU) for Rare Diseases, supported by Takeda. The State has also set up an Advisory Committee for Rare diseases which comprises of top academicians from reputed institutes. More than 150 Pediatricians from Medical Colleges, Government Hospitals and Private Practitioners have been trained to amplify their capacity for early diagnosis, referral and treatment and the State envisages to work in a Hub and Spoke model by providing services at more centers across the State.

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