Overview

Established in 2017 under the parent body Thalassemics India, Thalassemia Patients Advocacy Group (TPAG) is an advocacy group that focuses on protecting and promoting overall interests of the thalassemic community in India. Strongly aligned with The Rights of Persons with Disability Act, 2016 in India and Sustainable Development Goal No. 3 ‘Ensure healthy lives and promote wellbeing for all at all ages’; TPAG strives to work for educating and advocating the effecting practices led by policy level changes in India. TPAG believes in the power of advocacy to bring out monumental change in case of a life-threatening disease like thalassemia. The uniqueness of TPAG lies in the fact that it was established by seven patients of thalassemia major in the year 2017. The group is spearheaded by highly qualified working professionals such as lawyers, engineers and corporate professionals who want to bring about a change to make India thalassemia free by protecting and furthering the rights of the patients, prevention and management of thalassemia through promotion of best practices. TPAG has been working with a multi-pronged approach to address policy gaps, infrastructural issues and systematic challenges for prevention and management of Thalassemia. TPAG represented the case of thalassemics in India and policy recommendations to Shri. Harsh Vardhan, Union Minister of Health, Ministry of Health and Family Welfare in July 2019. The policy recommendations were preceded by a dialogue and deliberation on the critical issues related to care, management, and prevention of Thalassemia in India. Mission “To Protect the overall interests of Thalassemics and prevent Thalassemia” Vision “To advocate for a Thalassemia Free India where all Thalassemics are cured or healthy.”