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Patient Stories

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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