Our approach is, to create and leverage the collective voice of empowered group (s) of thalassemia patients and experts across India for engaging with all the four estates of the Indian democracy as well as the private sector and beyond, towards achieving our Mission and Vision.
In line with our Mission and Vision, we undertake sustained advocacy for formulation and implementation of policies and legislations (e.g. Rights of Persons with Disability Act, 2016) with a focus on:
- Prevention of rare diseases like thalassemia – screening, particularly of pregnant women
- Free and uniform management and care of thalassemia – availability of safe blood, diagnostics, life-saving drugs (iron chelators) and treatment of thalassemia related complications (cardiac, hepatic, endocrine complications)
- New treatment therapies – research and development
- Wellness and inclusion – psycho-social health, financial health and mental health, prevention of discrimination.