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Patient Stories

These Siblings Fight MPS Like Warriors

These Siblings Fight MPS Like Warriors

24-11-2017

Entering the COERD Centre of ORDI at IGICH, I was welcomed by the young chirpy voices of Ritika and Jhanvi (name changed for patient privacy reasons). Listening to their conversation they did not seem to be too happy about missing the Children’s Day celebrations at school as they had to come for the enzymes infusion […]

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Lalith's story: Raising two children with Sanfilippo

Lalith’s story: Raising two children with Sanfilippo

19-06-2017

Lalith is a father of two children with Sanfilippo syndrome. In this blog he shares his families story and his hopes for the future of research. Sanfilippo syndrome (MPS III) has become a way of life for me and my wife. As parents of two children with this deadly disease, our time is spent in […]

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This Gap In Our Healthcare System Prevents Me From Seeking Treatment For A Rare Disorder

This Gap In Our Healthcare System Prevents Me From Seeking Treatment For A Rare Disorder

19-06-2017

Eight years ago, when I was 16, I was diagnosed with a rare neurological disorder. The condition is known as spinocerebellar ataxia (SCA), which is one among a group of genetic disorders characterised by a progressively slow and uncoordinated gait – often with poor coordination of hands, speech and eye movements. As you can imagine, […]

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Bangalore PhD Student on Coming Out with Thalassemia

Bangalore PhD Student on Coming Out with Thalassemia

04-12-2015

My name is Namitha from Bangalore. I want to share my story to empower and enable others to come out as well. I am now a PhD student working on disability and psychology at the National Institute of Advanced Studies, Bangalore. I have come very far from where I began with beta-Thalassemia. I was four […]

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