Established in 2010, the Lysosomal Storage Disorder Support Society (LSDSS) is a non-profit organization and the first and leading patient advocacy group in India that provides support and assistance to individuals with Lysosomal Storage Disorders (LSDs) and their families. Patients and their families may choose to register with LSDSS for a number of reasons, including:
LSDSS has been successful in getting state-sponsored treatment through judicial intervention for several patients in states like Kerala, Karnataka and Tamil Nadu, as well as through some public-sector undertakings like Employees' State Insurance Corporation (ESIC). LSDSS has also partnered with crowdfunding companies like ImpactGuru to help registered patients raise funds for treatment.
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.
Peer support can be especially helpful for individuals with rare diseases, as it can be difficult to find others who are going through similar experiences. Through peer support, patients can exchange information, share tips and strategies for managing the disease, and offer emotional support to one another. Joining LSDSS can provide patients and their families with a sense of community and provide opportunities for peer support and networking.
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 a range of information and resources on LSDs, including educational materials, support groups, and lists of medical professionals who specialize in treating LSDs.
LSDSS is connected with several global pharmaceutical companies that have therapies under development for LSDs. By registering with LSDSS, patients with LSDs may be able to learn about clinical trials that are relevant to their condition and may be eligible to participate in these studies.
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 register with us and get support and connect with other LSD patients and families in India!