Ensure sustainable funding for Lysosomal Storage Disorders, says MPs ...Middle East

Business Standard - Economy
source : Business Standard ( Middle East ) () 40
Patients diagnosed with ultra-rare genetic conditions, including Lysosomal Storage Disorders, require sustainable funding support, 24 Parliamentarians from across party lines wrote to Union Health Minister Mansukh Mandaviya, seeking his intervention in the matter. Under the aegis of the Parliamentary Support Group for Rare Diseases, the MPs from both Lok Sabha and Rajya Sabha said this in a memorandum to the health ministry on Rare Disease Day, stressing the need for a sustainable fund to manage certain diseases under the National Policy for Rare Diseases, 2021. Rare Disease Day is observed every year on the last day of February. "Classified as Group 3a conditions in the National Policy for

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