Haemophilia is a high cost low volume disease. Being a relatively uncommon condition governments of the day are not very interested in developing comprehensive care for such a condition. Patient’s society where such kind of patients come together under one umbrella and fight for their rights and proper management of the condition has important role to play in developing and helping to deliver high standards care in such a condition. Haemophilia Federation of India, a patient’s organization played a stellar role in developing haemophilia care in this country and continues to do so today, present article explains how this organization engaged itself through local, national and international interaction in evolving haemophilia care in this country. The present description can act as a template for developing similar architecture of care for rare but difficult and costly to treat disorders’.
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Mr Vikas Goel, Dr. Devila Sahu, Wg.Cdr S. Roychoudhury and all my PWH friends of HFI.
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Ghosh, K. Evolution of Hemophilia Care in India. Indian J Hematol Blood Transfus 35, 716–721 (2019). https://doi.org/10.1007/s12288-018-1059-1
- Haemophilia federation of India
- Gene therapy
- Recent advances in treatment