Inside the silent world of Rare Genetic Disease- The Week
- -
..
Read More
Category Archives: Activities
Actor Karthi Sivakumar donating amount to LSDSS he won in Tamil KBC version in Vijaya TV in Chennai -Press Meet
- -
Actor Karthi Sivakumar donating amount to LSDSS he won in Tamil Version of “Kaun Banega Karodapathi” (KBC) in Vijaya TV in Chennai. To announce this a Press meet was conducted...
Read More
Karthi Turns hero for a cause
- -
Actor Karthi Sivakumar donating amount to LSDSS he won in Tamil Version of “Kaun Banega Karodapathi” (KBC) in Vijaya TV in Chennai. To announce this a Press meet was conducted...
Read More
Written Letter to Dr S R Chauhan, Medical Commissioner , Employees State Insurance Corporation, New Delhi, India on behalf of LSDSS requesting treatment to Dharmendra and Vishal suffering from MPS( Mucopolysachirodisis) who are a beneficiary of ESI card.
- -
Written Letter to Dr S R Chauhan, Medical Commissioner , Employees State Insurance Corporation, New Delhi, India on behalf of LSDSS requesting treatment to Dharmendra and Vishal suffering from MPS( Mucopolysachirodisis) who are a beneficiary of ESI card...
Read More
Written Letter to Honourable Chief Minister Mrs Mamata Banarjee, West BEngal to save the child Suffering from Gaucher in Kolkotta.
- -
Written Letter to Honourable Chief Minister Mrs Mamata Banarjee, West Bengal to save the child Suffering from Gaucher in Kolkotta...
Read More
Letter to Union Minister for Labor and Employment on 14th Sept 2012
- -
Wrote a Letter to Mr Mallikarjun Kharge – Union Minister for Labour and Employment for Treatment support to 2 patients Dharmendra and Vishal diagnosed with MPS ( mucopolysaccharidosis) This helped in opening a treatment option in ESI and also for..
Read More
Visit to Raja House to meet his son diagnosed with Gaucher in Chennai
- -
My passion to learn how each patients live in their house and to understand the family condition, How each parents with Rare Disease feel, Plan and take care of their loved one. This is a great learning form me to..
Read MoreWrote letter to Shri Narendra Modi -Cheif Minister and Health Minister
- -
Today sent request letter to Shri Narendra Modi , Honorable Chief Minister of Gujarat Ahmedabad, Gujarat. and Shri Jay Narayan Vyas ,Honorable Minister of Health & Family Welfare Government of Gujarat, Ahmedabad, Gujarat. Requesting for Requesting for creation of a special fund for..
Read More
Written letter to CM, Health Minister, Minister of Medical Education and others
- -
Today written letters to Andra Pradesh Govt requesting to Request to provide Enzyme Replacement Therapy (ERT) to Baby Harshini (16 months) Mr. N Kiran Kumar Reddy, Hon’ble Chief Minister ,Govt. of Andhra Pradesh,Hyderabad Sri. K. Murali Mohan, Minister for Medical Education,..
Read MoreOrganised a “Media WorkShop” on behalf of LSDSS in Hyderabad -Andra Pradesh
- -
Organised a “Media WorkShop” on behalf of LSDSS On Thursday, 21 June 2012 on Gaucher Diseases. Gaucher disease is a rare genetic disorder that affects an estimated 1 in 50,000 to 1 in 100,000 people in the general population Present on..
Read More
CME in Ahmedabad- Gujrat
- -
CME on LSD was organised to create awareness about Treatable LSD in Ahmedabad , Gujrat on 8th April 2012. THis was in association with Dr JAyesh Seth from Institute Of Human Genetics. Dr Seema Kapoor- MAMC, Delhi, Dr Mamta Muranjan-..
Read More
World Rare Disease Day 28th Feb 2012, Mumbai, Singer Mr Shaan blessed the Occasion
- -
Conducted the World Rare Disease Day for the 3rd year in Mumbai Jointly with KEM hospital Mumbai. Singer Mr Shaan blessed the occasion. Dr Mamata Muranjan and all the Gentic doctors from India attended the function...
Read More
Shire First Meeting in India for Humanitarium Program
- -
Participated in the first ever meeting of Shire in Mumbai – India to discuss the Standard Operating Procedure to start a Humanitarium Program. This is the effort of 3 years continues lobbying with company and throgh MPS society – UK. ..
Read More
Letter to Lokasabha Secretory for treatment support to LSD patients on 27 Aug 2011
- -
Wrote a Letter to Lokasabha Secretory for treatment support to Rare Diseases – LSD ( Lysosomal Storage Disorders patients on 27 Aug 2011..
Read More
Speaker at CME on Metabolic Diseases in Pediatric Practice
- -
Speaker at CME on Metabolic Diseases in Pediatric Practice and presented activities of LSDSS organized by department of Pediatrics, SAT Hospital Medical College, Thiruvananthapuram..
Read More
Received a letter from Chief Minister Smt Shiela Dikshit – Some light in the tunnel
- -
This day is a special day. After continues effort of Advocacy, Several meeting with Chieif Minister, HEaltH Minister, Health Secretory, Followup from LSDSS Delhi team, with Delhi Govt. This letter was a Point of HOPE...
Read MoreWritten letter to Chief Minister,Health Minister Govt of Kerala
- -
Written letter to Chief Minister,Health Minister Govt of Kerala Requesting to provide Enzyme Replacement Therapy (ERT) to Master Govind (7 yrs.) diagnosed with Pompe Disease. His sister lost life to Pompe Disease it self. ..
Read More
Karthi Pledge Support to LSDSS – Press Meet – Chennai
- -
We had arranged a Press meet in Chennai to announce formally the support of Mr Karthi Sivakumar- Leading cine actor in Tamilnadu and South India as a “Cause Ambassador” to LSDSS( Lysosomal Storage Diseases Support Society. ..
Read More