Rare Disease Day 2017

 
 

 
 

Rare Disease Day Organized in Bangalore. Karnataka

 

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Media Coverage : MPS Awareness Day 2013, Ahmedabad

Celebrate MPS Awareness Day!

Amartya Sen for confronting politicians who disrupt Parliament with ‘estimated numbers of deaths’

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Rare Disease Day- 27 Feb - New Delhi

 


Born with a Genetic Disease, they are nobody's Childern :

Meet to create awareness about Rare Genetic Disorders 2nd Feb 2013 Hyderabad, Andhra Pradesh

Meet to create awareness about Rare Genetic Disorders 6 Feb, 2013 Ahmedabad, Gujarat

Meet to create awareness about Rare Genetic Disorders 17 January, 2012 Jaipur, Rajasthan

Meet to create awareness about Rare Genetic Disorders. 15 January, 2012 Lucknow, UP

The New Indian Express - 15th October 2012

Coverage Kolkata Event, 16th Oct 2012

JANSATTA Kolkata Event, 17th Oct 2012

LSD patient Govind appeal to State Government of Kerala

First Pompe Awareness Day in India on June 01 2012 at Bangalore

First MPS Awareness Day in India on May 15 2012 at New Delhi

Patient story

Rare diseases day celebrated at Jaipur on May 15 2012

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LSDSS Report

LSDSS Activity Report [ 2011 ]

2010

Rare diseases day celebrated at Chennai on Feb 28 2011

The Cause Ambassador of Lysosomal Storage Disorders Support Society (LSDSS) and noted Tamil film actor Karthi Sivakumar offered a glimpse of his philanthropicside at LSDSS– Live for a Cause event held at the Bharatiya Vidya Bhavan Kendra, Chennai. The actor donated the cash prize of Rs17.5 Lakh which he had won at the popular TV quiz game show ‘Neengalum Vellalam Oru Kodi’– to LSDSSto facilitate their efforts in helpingpatients receive much-needed diagnosis and critical treatment.

Occurring in about one-in-5,000 live births, Lysosomal Storage Disorders (LSDs) are a group of about 45 rare genetic disorders triggered due to the deficiency of specific enzymes in special compartments (lysosomes) of the cells. Most LSDs are managed through disease-specific supportive care measures. Six of the LSDs can now be treated by means of Enzyme Replacement Therapies. India presently has about 300–400 patients diagnosed with treatable LSDs. Tamil Nadu has 130 patients suffering from such rare genetic disorders; however, only 42 of these cases are treatable. Empathizing with the plight of LSD patients and their harried family members, Mr Karthi Sivakumar became the “Cause Ambassador” in 2011seeking to contribute to the cause of children afflicted with lysosomal storage disorders. Speaking to the media, Mr Sivakumar said: “We are a generous nation founded on a rich heritage of humanity. Each one of us should therefore helpsuch patients do wellby taking collective action. I am happy to be the voice of these children and contribute in whatever little way I can to support the Society.”

Mr Prasanna Kumar Shirol, President, LSDSS said: “We are pleased and grateful to Mr Karthi, who has stepped forward many times to support such children.A number of patients across Tamil Nadu suffer from LSDs but cannot afford treatment. Only government intervention can save these suffering persons and help them lead regular lives. Government support to finance the treatment of LSDs is the need of the hour and we hope this happens sooner rather than later so that it is not too late for some patients.”

 

 


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8th International Rare Disease Day
-New Delhi

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