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I was a part of First Ever summit dedicated to advancing equitable care for rare diseases in older adults. The meeting was attended from 25 countries across Canada, Latin America, Europe, and Asia, representing patient and caregiver communities, patient advocates,..

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..

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