MP Fauzia Khan discussed the lack of urgency shown by the Centre of Excellence (COE) in assisting up to 415 rare disease patients . Khan said that the alleged delay in the treatment of these patients, most of whom are children, has claimed the lives of ten people in the recent years .
AURANGABAD: During the zero-hour discussion, Member of Parliament in the Upper House Fauzia Khan discussed the lack of urgency shown by the Centre of Excellence (COE) in assisting up to 415 rare disease patients around the region.The MP said that the alleged delay in the treatment of these patients, most of whom are children, has not only claimed the lives of ten people in the recent years, but it also poses a danger to the remaining patients.She also noted that the Union government revised the National Strategy for Rare Diseases 2021 in May 2022 and gave all the rare diseases groups Rs 50 lakh in monetarily aid.However, patients are being treated with an awful delay in the formalities at both COEs and the Ministry of Health and Family Welfare (MOHFW).
The COEs submitted 19 proposals for funding of research in response.Khan said that no one of the ten COEs has yet to receive a single patient, causing fear and confusion among the patient population.These rare disease patients, mostly infants, are presenting with life-threatening, rare genetic disorders, such as Lysosomal Storage Disorders (LSDs), Gaucher disease, Pompe disease, MPS I, and Fabry disease, according to the NCP MP.The MOHFW adopted the national plan for rare diseases on March 30, 2021.