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The TSC Alliance India is a dedicated non-profit organisation committed to doing everything it takes to improve the lives of individuals and families affected by Tuberous Sclerosis Complex (TSC) across the country. Our mission spans multiple areas of impact: advancing research, strengthening standards of care, expanding access to critical services, and advocating for the rights and needs of everyone touched by this lifelong condition.
Based in Hyderabad, India, the TSC Alliance India has successfully grown into a nationwide network, connecting parents and eminent doctors from across regions. Through this strong and ever-expanding community, we continue striving toward a future where no family faces TSC alone.
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The TSC Alliance India is a recognized nonprofit that does everything it takes to improve the lives of people with TSC in India.
TSC Alliance India is dedicated to building a strong, supportive community for individuals and families affected by tuberous sclerosis complex (TSC). It establishes local support groups and online platforms to connect patients, caregivers, and families, encouraging the sharing of experiences and mutual support. By partnering with the global TSC Alliance, it brings in valuable resources, educational materials, and advocacy tools tailored to the Indian context. The organization also works to improve access to specialists and healthcare providers, while raising awareness among medical professionals to promote early diagnosis and better care. Volunteers and caregivers are empowered through training and peer support.
TSC Alliance India empowers caregivers through a range of resources and support programs, including peer-to-peer community connections. The organization hosts educational seminars, research conferences, and workshops in major cities, providing up-to-date information on TSC care and management. Caregivers also benefit from a library of educational YouTube videos and resource materials, offering practical advice and support. By partnering with the global TSC Alliance, the India chapter expands its reach and effectiveness, ensuring caregivers have access to the latest knowledge, community support, and advocacy tools for managing TSC.
TSC Alliance India advocates for better care of the TSC patient community by uniting over 1,000 families nationwide to amplify their needs and push for policy change. The group actively lobbies the government for a comprehensive rare disease policy, increased financial support, and improved access to affordable treatments, highlighting the lack of current support and awareness. They collaborate with the global TSC Alliance, pharmaceutical companies, and medical professionals to organize support groups, promote awareness, and work towards establishing specialized TSC clinics and comprehensive care in India. Their efforts focus on empowering families, driving research, and improving clinical outcomes.