The role of patient organizations in the rare disease ecosystem in India: an interview based study Mohua Chakraborty Choudhury and Gayatri Saberwal* Abstract -Orphanet Journal of Rare Diseases
“Mr. Shirol mentioned that it took seven years to diagnose his daughter with Pompe disease although there were symptoms since the child was few months old.”
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Mohua-Gayatri-OrphanetJournal-May2019