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Cystic Fibrosis- AROUBA KABIR

Digging Deep

After 21 years of struggling with my condition, I finally got my diagnosis – Cystic Fibrosis. There were many dark days with doctors giving me not more the 6-7 years more to live. Today, in my 30’s, I am the oldest healthiest Cystic Fibrosis patient in India. I learnt to understand my body and what it needed, which resulted in a career change from being a journalist to a mental health and wellness specialist. Today, I am the founder of an organisation called Enso Wellness which not only helps people with rare diseases but also healthy people. We do this together by finding the best versions of themselves through yoga, therapies and counselling, These were all techniques I went through in my search for proper management strategies for my condition. I considered it my duty to share what I had learnt. This is my greatest Rare Achievement – taking the lessons from challenges and sharing it people like and unlike me.

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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