MPs) from the Rajya Sabha on Tuesday met Union health and family welfare minister Mansukh Mandaviya seeking immediate intervention to provide treatment to patients diagnosed with rare genetic conditions such as Lysosomal Storage Disorders.
The MPs also submitted a memorandum to Mandaviya seeking priority treatment for patients, diagnosed with Group 3(a) rare genetic conditions. “Despite the notification of the much-awaited National Policy for Rare Diseases 2021 in March this year, these patients continue to be at grave risk due to the lack of any sustainable funding mechanism for treatment," the MPs said. “We would like to draw your immediate attention towards the need to prioritize treatment for at least the ultra-rare diseases—treatable