The LSD Support Society of India is a group comprised of patients, families, and caregivers who know what it’s like to live with Lysosomal Storage Disorders (LSDs). If you have never heard of lysosomal storage diseases, they are group of approximately 40 rare inherited metabolic disorders that result from defects in lysosomal function. Lysosomal storage diseases result when a specific organelle in the body’s cells, the lysosome, malfunctions.
The LSD Support Society of India aims to create a strong voice for LSD patients in India by forming a strong national support group. The organization has been incorporated as a registered non-profit organization to raise awareness and educate the general people about various rare genetic life threatening LSD’s in India.
LSD Support Society Objectives:
- To advocate with the central and state governments and other stakeholders, to establish a sustainable health care model for all LSD patients in India
- Convince the governments to promote early and accurate diagnosis and screening programs for these diseases
- Help all treatable LSD patients to get proper treatment in a reasonable time
- Share their experiences to create a strong public voice on the issue
- Generate ideas for best supportive care and optimum patient outcomes. This would include, but not be limited to, development of mechanisms for rehabilitation, counseling, capacity building and fund raising, amongst others activities