Our Team
LSDSS is led by an executive committee of parents and caregivers of people living with lysosomal storage disorders. They work across India to support families, raise awareness and advocate for better care.
Office bearers
The executive committee’s president, secretary and treasurer.
MS
President
Manjit Singh
Manjit is self-employed in the legal and corporate field, with 38 years of experience. He lost two sons to MPS II (Hunter syndrome) because they could not get enzyme replacement therapy in time. He works to make sure every person with an LSD in India can get enzyme replacement therapy or the best available treatment.
US
Secretary
Umesh Sharma
Umesh is a parent of an LSD patient and has been with LSDSS since it was founded in 2010. He is actively involved in patient advocacy, raising awareness and tackling the many challenges faced by LSD patients in India.
AU
Treasurer
Amit Upadhayay
Father of a child with MPS II, Amit works to raise awareness of LSDs in Bihar, Chhattisgarh and Jharkhand.
Committee members
Parents and caregivers representing families across India.
RM
Member
Raja Murugappan
Father of a child with type 3 Gaucher disease who is on enzyme replacement therapy, Raja works tirelessly for people with LSDs in South India.
KK
Member
Kamaljeet Kaur
Kamaljeet has been counselling patients and families since October 2019. She organised Gaucher Awareness Day at Sir Ganga Ram Hospital, Delhi, in 2019 and International Rare Disease Day at AIIMS Bhopal in 2021.
MM
Member
Manoj M.
LSDSS Kerala State Coordinator and parent of a child with Pompe disease, Manoj has tirelessly pursued the LSDSS case in the Kerala High Court.
KM
Member
Kiran Mamidala
Kiran’s daughter was diagnosed with Gaucher disease at 16 months, and he wants to give back to the rare disease community by working with LSDSS. He holds an MBA and a bachelor’s degree in microbiology, and has 14 years of experience in the pharmaceutical industry.
HB
Member
Harsh Bhasin
Parent of a child with MPS II, Harsh is an active member of LSDSS and liaises with the Ministry of Health and other government departments.
SB
Member
Shital Bhatkar
An LSDSS member since 2011 and State Coordinator for Maharashtra, Shital is the mother of a child with Niemann-Pick disease who has since passed away. She liaises with KEM Hospital, Mumbai, and counsels and guides LSD patients in the state.
Want to help other families?
LSDSS is run by people who have lived with LSDs. Join us as a volunteer, or contact your state coordinator.