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Prasanna Kumar B Shirol is the co-founder and Executive Director of ORDI (Organization for Rare Diseases in India). Earlier in 2009, Prasanna Founded the Lysosomal Storage Disorder Support Society - India (LSDSS) along with other parents and served as the Founder President of the society for 4 years. He is also instrumental in starting a special awareness disease Specific days for Pompe, Gaucher and Fabry for the first time in India. He has represented Indian rare disease patient’s community in various national and international conferences and meetings. He is also a father to a 19 years-old daughter diagnosed with Pompe, who is now studying in B Com 1st year.