To improve the lives of Indian patients suffering from Lysosomal Storage Disorders (LSDs) such as Gaucher Disease, Pompe Disease, Fabry Disease, and Mucopolysaccharidosis (MPS), LSDSS has undertaken various initiatives as described below.
LSDSS has been successful in getting state-sponsored treatment through court intervention for several patients in states like Kerala, Karnataka and Tamil Nadu. LSDSS can also explore treatment availability through humanitarian aid programmes of pharmaceutical companies.
Since 2010, LSDSS has been constantly striving with the Central and State governments to resolve various challenges faced by LSD patients in India. Because of its unwavering efforts, LSDSS has been able to achieve major successes such as notification of the National Policy for Rare Diseases by the Government of India and cancellation of GST on treatment imported through humanitarian aid.
Living with a rare disease can be an isolating experience. We can help you connect with other LSD patients/caregivers across India so you can exchange experiences with others in the same situation.
LSDSS was the first organization to commemorate the International Rare Disease Day in India in 2010. Since then, we have been raising awareness about various LSDs by organizing the Rare Disease Day as well as disease-specific awareness days like Gaucher day, Pompe day, MPS day, and Fabry day every year.
We also undertake media awareness campaigns across India to increase awareness among the policymakers and key stakeholders about the various challenges faced by rare disease and LSD patients through print and digital media.
We undertake Continuing Medical Education (CME) initiatives for healthcare professionals in India to familiarize them and improve their knowledge about Lysosomal Storage Disorders in order to achieve improved diagnosis and management of LSDs.
We can provide educational and information materials about various LSDs, such as disease-specific booklets, to help you better understand the disease and learn the dos and don'ts with regards to disease management, and can also guide you to other useful resources.
We are associated with the most renowned and expert geneticists in India and worldwide and can help you get your health evaluated by them during events like health camps during the Rare Disease Day. We can also provide information about any clinical trials for your disease ongoing or planned in India.
We can provide supportive and rehabilitative care and also provide guidance and counselling to patients and families regarding various psychosocial and practical aspects like everyday life challenges, disease management, rehabilitation, and fundraising for treatment.
Complete the form below to become a member of the LSDSS and get support, guidance and counselling about your condition, as well as network with other LSD patients and families in India!