Centre gave Rs 22.2 cr for rare disease care of 134

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The Union Health ministry has released Rs 22.20 crore for 134 patients undergoing treatment for rare diseases at eight designated hospitals, since the guidelines for providing financial aid to such patients were issued last August. On May 19, the ministry increased the financial support from Rs 20 lakh to Rs 50 lakh for patients belonging to all categories of rare diseases, and on August 11 issued guidelines to grant financial aid to such patients under the National Policy for Rare Diseases, 2021.

According to officials, the number of Centres of Excellence (CoEs) designated for treating those with rare diseases like Gaucher Disease, Tyrosinemia, Severe Combined Immunodeficiency (SCID) and others have also been increased from eight to eleven.

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"Since the guidelines were issued, applications from patients seeking financial assistance have been received from eight CoEs of which Rs 22.20 crore have been released for the treatment. Budget allocated for rare diseases for 2022-2023 was Rs 25 crore. Rest of the Rs 2.80 crore will soon be disbursed for the treatment of rare disease patients," an official source told a news agency.

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