At Sankalp India Foundation, We firmly believe that each child must be given an option for complete cure irrespective of their financial status. The HLA test is the first step which determines whether the sibling can be a matched donor to the child suffering from thalassemia. The cost of HLA typing in India is around Rs. 10,000/- per family making it inaccessible to most families. Unfortunately, most families suffering from thalassemia are unaware of the possibility of cure.

The other day I had visitors who had come to one of our day care facilities. For last few years the children - siblings - both thalassemia majors - were being treated at a relatively resource crunched facility. Chelation was barely given and transfusions were given only when they could not be avoided further. I was trying to explain that we would support them with comprehensive treatment if and only if they commit to come every 20-30 days. Local language is not my strength and the look on their faces told me that they were unconvinced.

Thalassemia management offers a unique opportunity for measuring the quality of blood transfusion services. Children suffering from thalassemia who are on chronic transfusion therapy generally come back to the same centre for treatment and management. This enable insights into blood transfusion medicine which otherwise may be very difficult to get.

An intent to periodically measure the quality of blood transfusion service and also to act upon the findings is obviously the first step.

The book of Thalassemia International Federation’s guidelines on the management of transfusion dependant thalassemia is an essential resource for anyone involved in care giving for patients suffering from thalassemia. The latest edition has been released recently and is available for viewing and download from TIF’s website at http://www.thalassaemia.org.cy.

The 3 years journey of Thalassemia Day Care centre is highlighted below:

Date: 22-Oct-2011 | Walk for Thalassemia with Applied Materials

The followings are the news and updates from Sankalp India Foundation  for the month of October 2014.

Rakta Kranti

11 blood donation drives were organized in October collecting 926  units.

Fail Story is a new section in Sankalp Patrika. We often share stories of success with you. We thought that it may be interesting or rather important to share with you the stories of failure that we face. We hope that one of you will find a better solution to the problems we faced. At least the learning we had could be made known  so that the next attempt does not have to discover the problems all over again.

Sankalp has been involved in thalassemia management for last 3 years. What started as an initiative with very little prior experience and knowledge has blossomed into a comprehensive thalassemia management and care program. In the last three years we have benchmarked our performance with our won prior results and using the Thalassemia international Federation's guidelines for clinical management as the gold standard to compare against. Centres supported by us have indeed shown vast improvement in the quality of care being given to the thalassemia patients.