Despite availability of funds, patients with rare Fabry Disease yet to be given treatment, says support society

Despite the availability of ₹50 lakh of financial support for treatment of all rare disease patients, none of the six patients with Fabry Disease, who have been shortlisted for treatment on the Union Ministry of Health and Family Welfare’s crowdfunding portal, have been given the treatment, the Lysosomal Storage Disorders Support Society has said. In a letter to Union Health Minister Mansukh Mandaviya, Manjit Singh, national president of LSDSS sought the Minister’s immediate intervention to save the lives of patients with Fabry Disease, a rare yet treatable disease. Mr. Singh, in his letter, said that mentioned that DCGI-approved treatment for Fabry Disease has been available in India for the last two decades. Mr. Singh appealed to the Union Health Ministry to issue necessary guidelines to the COEs to provide equal weightage to all notified disease conditions, including Fabry Disease under the national policy, and also to build capacities for preventive screening of patients.