Patients of rare diseases urge Union Health Minister help for faster treatment at Govt hospitals
New Delhi: Patients of rare diseases waiting for treatment at AIIMS and Maulana Azad Medical College have urged Union Health Minister Mansukh Mandaviya's intervention to expedite the process. In a letter to the health minister, the parents and relatives of the more than 70 patients alleged a lack of urgency and empathy on the part of the two government hospitals.
The patients registered with the Centres of Excellence (CoEs) in Delhi -- AIIMS and Maulana Azad Medical College (MAMC) -- have been diagnosed with Lysosomal Storage Disorders (LSDs) like MPS I, MPS II and Pompe, Fabry, the letter in Hindi said.
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All these conditions are classified as Group 3(a) in the National Policy for Rare Diseases 2021, for which the ministry had announced funding support for treatment up to Rs 50 lakh in 2022, it said.
Fahim Rayeen, a four-year-old patient registered with the All India Institute of Medical Sciences (AIIMS) Delhi passed away in December 2022 while awaiting treatment, the letter said.
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