My daughter Nidhi, India’s First Pompe Patient, Pompe a Rare Genetic condition. She lived on Tracheostomy for 16 years, and was going to School / college with 3 machines. She inspired millions in India for the best living example with Rare disease and became a reason for Change in India. She is the reason for me to start Rare disease advocacy movement in India, Who led the advocacy movement in India. Today there Various policy changes in INDIA Including Rare Disease Policy and treatment. www.ordindia.in, www.racefor7.com Mobile : 9980133300 Email: prasannashirol@gmail.com