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Alagille Syndrome- Shambhavi Ravishankar

DISCOVERING HOPE

The day I realised what hope means was the day I realised that I have never known “good health” on a single day in my life, and that despite that fact, I have created my own normal and done things beyond even my wildest dreams! The things that normal people take for granted – such as getting older (celebrating a birthday), are things that bring me joy and delight. I revel in the fact that I have lived one more year and lived it to the fullest. This ability to choose joy, to find reasons to smile, to be open and try new things and to not hold myself back – that to me is hope, and is my greatest Rare Achievement. Not my career, financial independence and degrees.

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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