Maldivian Thalassaemia Society (MTS) is a non-governmental organization which came into existence in the year 1994 – the sole purpose being to improve and enhance quality of lives of Thalassaemics in Maldives. With support from other parents, the co-founders Mohamed Moosa Didi and Mohamed Rasheed Ibrahim, both parents of Thalassaemic patients, founded this Society because of the urgent need for such an organization at that time.
During the infant years, Maldivian Thalassaemia Society was a platform which provided emotional and financial support (when funds were available). However, as time passed, the need for networking, raising awareness, other social and fund-raising activities and most importantly working at a policy level in advocating for rights of Thalassaemia patients and parents were identified as crucial aims such an NGO should address. The past years has seen MTS working tirelessly to achieve these objectives.
In this context, MTS has focused largely at improving and sustaining the quality of care and clinical management of Thalassaemia patients by exchanging dialogue at Policy level healthcare professionals including those at Ministry of Health and Family, National Thalassaemia Centre and Male’ Health Corporation Services. Many social activities were organized for both Thalassaemia patients and parents and fundraising strategies were established to sustain the programs run at this organization. MTS has also been instrumental in conducting awareness campaigns in Male’ and in outer islands. From 2005 until 2008, one such campaign has been held each year on a large scale.
However, MTS faces multi-faceted problems when trying to achieve these objectives. Based in a country with extremely difficult geographical isolations, it is particularly difficult to achieve the aims as an NGO with limited capacity in terms of both funds and human resources. For example, due to the huge financial burden of travelling within Maldives where all the inhabited islands are scattered widely across the nation, many awareness campaigns and other projects in the islands have to be abandoned in favour of cost effective projects.
Along with these limitations, MTS also faces challenges such as lack of proper mechanisms to sustain funding, lack of technical expertise and lack of policy level commitment including lack of guidelines or strategies to revitalize awareness, prevention and control program and to sustain the best quality clinical management and care for Thalassaemia patients.