Lysosomal Storage Disorders Support Society
October 28, 2022 | 7.30-9 PM IST
Lysosomal Storage Disorders (LSDs) are very rare genetic disorders, the treatment of which involves very high cost and lifelong Enzyme Replacement Therapy costing in the range of INR 50 lakhs to INR 2 crores annually per patient. Due to the challenges in India in accessing this prohibitively expensive treatment in the absence of government and insurance support, there is an urgent need to focus on the prevention of these disorders to reduce the future affected births and burden of LSDs.
In this webinar, Dr. Mamta Muranjan, a leading geneticist from KEM Hospital, Mumbai, gives an overview of what LSDs are, followed by a panel discussion with Dr. Hrishikesh Pai, President of the Federation of Obstetric and Gynecological Societies of India (FOGSI) to understand the role of obstetricians and gynecologists in the prevention of these rare genetic disorders.
April 29, 2022 | 7-8 PM IST
To commemorate International Pompe Awareness Day, the LSDSS, in collaboration with Sanofi Genzyme, organized a scientific webinar/CME on Pompe Disease and its Management on 29th April 2022.
The webinar had Dr. Darly Saramma Mammen, Professor & HOD, Department of Paediatrics, Govt Medical College, Kottayam as the chairperson and moderator, and Dr. Mohandas Nair from Govt. Medical College, Manjeri; Dr. V. H. Sankar, Professor of Paeditrics & Geneticist, Government Medical College, Thiruvananthapuram; and Dr. Mridula Shankar, Consultant Paediatrician, Govt. District Hospital, Kannur as the expert speakers.