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Years with Cystic Fibrosis

I vaguely remember my childhood and I remember the episode of breathlessness, coughing, getting tired, waking up early and lot of stomach upset. And in my school years, I remember few...

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My Opinion: By Mr. Samir Sethi – President IRSF (Indian Rett Syndrome Foundation) – On order drugs (Price Control) amendment order 2019

I think this is a positive move of the Government. We know that pharma companies have been shying from entering the Indian market specifically with their new formulations and molecules...

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Towards Enabling Precision Medicine Cohort Studies at the Community Level

– Dr. Harsha K Rajasimha Co-Founder and Board Director, Organization for Rare Diseases India. Precision medicine paradigm is all about targeting medicines to patient cohorts that are most likely to...

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No Human Life Should Be Judged By A Statistic

I do believe that life comes to a full circle, as if some mysterious writer called God were penning down the twists and turns of our life. For me, it...

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Upcoming Events

Our Executive Director Mr. Prasanna Shirol 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, healthcare professionals, and healthcare policy experts. This is a short video highlighting the impact of the initiative to date, in the words of the COLLABORATE Community.

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