About LYSOSOMAL STORAGE DISORDERS SUPPORT SOCIETY- INDIA
Lysosomal Storage Disorders Support Society (LSDSS)
The LSD Support Society of India is a group made up of people who know what it’s like to live with Lysosomal Storage Disorders – patients/families/caregivers. It aims to create a strong voice for LSD patients in India by forming a strong national support group. It has been incorporated as a registered non-profit organization to raise awareness and educate the general public about various rare genetic life threatening LSDs in India.
LSDSS is registered under Society Registration Act 1860 vide registration number S/69555/2010 in New Delhi
Aims and 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 time.
- Share their experiences to create a strong public voice on the issue.
- Ideating 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.