Sankalp India Foundation(S.I.F.) has been working for voluntary blood donation since 2003. Since 2011 S.I.F. has also taken up the cause of thalassemia management and cure. In last 2 years the organisation has supported more than 400 children with thalassemia through 2 thalassemia day care centers in Bangalore, one at Indira Gandhi Institute of Child Health and the other at Rashtrotthana Parishat. The organisation has established links with national and international thalassemia experts both on management and cure fronts and is making attempts to ensure that the children suffering from thalassemia are provided with adequate and scientifically guided treatment and support irrespective of their financial status.
In our experience of working for thalassemia in Karnataka, we realise that there is a major gap in the understanding of the disease burden of the state government and the real situation. Over last few years the central government has recognised thalassemia as a non-communicable disease needing attention but has left the onus on the states to device strategies to provide assistance to individuals suffering from thalassemia based upon the prevalence of disease at a local level. Unlike the neighboring states of Tamil Nadu and Maharashtra, there is complete lack of support from the state government in Karnataka for thalassemiacs.
We believe that there is an urgent need to bring together the institutions in the state who are involved in the Management of thalassemia in one way or the other. We have devised a format to capture the work done by the various centers, the facilities offered and compile the list of patients suffering from thalassmia. After bringing together the representation from the various institutions and compiling the current disease burden and management status, Sankalp India Foundation plans to facilitate a joint representation by all institutions working for thalassemia to the Ministry of Health, Govt. of Karnataka. We believe that if we are able to come together as a group and make an effective and well informed representation, we should be able to bring the attention of the Government to this grossly neglected area and seek assistance from the state government.
Data from various centers across the state has started pouring in. In case you are aware of any center which is involved in thalassemia management, kindly bring the same to our notice. Please contact us by calling +91-9900161551 or mail to email@example.com.