Taking up the cudgel on behalf of the patients diagnosed with ultra-rare genetic conditions such as Lysosomal Storage Disorders, 24 Parliamentarians from across party lines have urged the Centre to ensure a sustainable fund to manage certain diseases under the National Policy for Rare Diseases, 2021.<\/p>\n
This unending delay on the part of the Centres of Excellence (CoEs) has caused serious concern and anxiety to the patients and their families. Most of these patients are diagnosed with life-threatening rare genetic conditions, including Lysosomal Storage Disorders like Gaucher disease, Pompe disease.<\/p>\n","protected":false},"excerpt":{"rendered":"