Lysosomal Storage Disorders Support Society

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Executive Committee

The LSDSS, established in 2010, is a pan-India non-profit Society registered under the Societies Registration Act, 1860, and represented by parents and caregivers of LSD patients who are continually striving to spread awareness about LSDs and working untiringly to accomplish the objectives of the Society.

President

Manjit Singh

Manjit is self-employed in the legal and corporate world, having an experience of 38 years. He has lost two sibling sons to dreaded MPS-2 (Hunter’s Syndrome) in the absence of timely ERT. He is striving to get ERT or the best available treatment for all identified LSD patients in India.

Secretary

Umesh Sharma

Umesh is a parent of an LSD patient and has been associated with the LSDSS since its foundation for over 10 years, and has been actively involved in patient advocacy for LSDs, including creating awareness and taking initiatives to overcome the various challenges faced by LSD patients in India.

Treasurer

Amit Upadhayay

Father of an MPS-2 child working towards awareness of LSDs in Bihar, Chhattisgarh, and Jharkhand.

 

 

 

 

Member

Raja Murugappan

Father of a Type-3 Gaucher child on ERT, working tirelessly for the cause of LSDs in South India.




Member

Kamaljeet Kaur

Mrs. Kaur has been working 24×7 to take the LSD cause forward. She has been involved in counselling patients and families since October 2019 and also organized the Gaucher Awareness Day at Sir Ganga Ram Hospital, Delhi, in 2019 and International Rare Disease Day at AIIMS, Bhopal in 2021.

Member

Manoj M.

LSDSS Kerala State Coordinator, parent to a Pompe patient, has been untiringly pursuing LSDSS judicial case in the state high court.

Member

Kiran Mamidala

Kiran is the father of a 4 years old girl who was diagnosed with Gaucher Disease at the age of 16 months. He became aware about rare diseases after his daughter’s diagnosis and wishes to give back to the community by working with the LSDSS. He holds an MBA and a Bachelor’s degree in Microbiology and has 14 years of pharma work experience.

Member

Harsh Bhasin

A parent to an MPS-2 patient, active member of LSDSS, keeps liaison with Ministry of Health and other government departments.



Member

Shital Bhatkar

An LSDSS member since 2011, mother to a Niemen’s Pick patient (now in eternity). She is also an LSDSS State Coordinator for Maharashtra, keeps liaison with KEM Hospital, Mumbai, and counsels and guides state LSD patients.