Thalassaemia is a rare blood disorder which causes the blood to have less haemoglobin. Children suffering from thalassemia need regular blood transfusions- once every fortnight to 20 days. In some cities of the country such as Mumbai and Bengaluru, the children were getting an assured blood supply for their needs. Some non-profits who worked with these children, were organising blood donation camps regularly to ensure good supply for those who need blood transfusion.

But since the COVID-19 pandemic began, this system has gone for the toss. The large blood donation camps have stopped completely. The non-profits are now struggling to get donors. This has played havoc in the lives of these children.

In this episode of Rare Lives, senior reporter, Menaka Rao speaks with Vinay Shetty from THINK foundation in Mumbai, Rajat Agarwal from Sankalp foundation in Bengaluru and Atul Gera from Ranchi. These activists are trying hard to keep the blood supply in their cities going. We also speak with a 13-year thalassemia patient, Ira Sukheja and a Rajshekhar, parent of a 9-year old thalassemia patient, Rajeshwari.

Thalassaemia is a rare blood disorder which causes the blood to have less haemoglobin. Children suffering from thalassemia need regular blood transfusions- once every fortnight to 20 days. In some cities of the country such as Mumbai and Bengaluru, the children were getting an assured blood supply for their needs. Some non-profits who worked with these children, were organising blood donation camps regularly to ensure good supply for those who need blood transfusion.
But since the COVID-19 pandemic began, this system has gone for the toss. The large blood donation camps have stopped completely. The non-profits are now struggling to get donors. This has played havoc in the lives of these children.
In this episode of Rare Lives, senior reporter, Menaka Rao speaks with Vinay Shetty from&nbsp;<a href="http://www.thinkfoundation.org/index.php">THINK foundation</a>&nbsp;in Mumbai, Rajat Agarwal from&nbsp;<a href="http://www.sankalpindia.net/">Sankalp foundation</a>&nbsp;in Bengaluru and Atul Gera from Ranchi. These activists are trying hard to keep the blood supply in their cities going. We also speak with a 13-year thalassemia patient, Ira Sukheja and a Rajshekhar, parent of a 9-year old thalassemia patient, Rajeshwari.

There are more than 7,000 documented rare conditions in the world. While there is no known cure for some conditions, where there is a cure (or maintenance through medicines is possible), the cost of medication is exponentially high to bear. This podcast will focus on the status of rare conditions in India, which has been talked about very little in Indian society. It will be a one-of-its-kind attempt in India to document the gamut of challenges and achievements of people with rare conditions and will open a constructive dialogue on what can be done. This is important because an estimated 1 in 20 Indians are affected by a rare disease. The series will bring out the human face behind rare conditions – the patients, the families, caregivers, doctors, activists and geneticists working to improve life for people with rare conditions.

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