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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 all began with a class in Drug Designing, where I was intrigued by the term “Orphan Disease”. Orphan diseases, or rare diseases are diseases which afflict people very rarely. Such is the rarity that almost no government or company is willing to invest in research and development of its cure due to shortage of ‘market’.

Orphan Diseases hence, are almost a poetic injustice. And if you’ve ever noticed, the best of stories are based on injustice and tragedies. We all love tragedies- until they happen to us. And so, I loved the concept of Orphan Diseases- until a surgery a year later left me ailing from one. And now I know exactly what rare diseases are. Rare Diseases – being afflicted by an ailment which has no cure. Waking up everyday hoping you get better while fighting back the fear that you’ll get worse. Hoping for a cure endlessly, day after day after day, but losing hope because ‘it just ain’t profitable’.

Thereafter, life changed. I guess humans are meant to adapt- we all fight for survival. And so hospitals became my second home, and doctors became my closest

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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