This is a lifelong, inherited bleeding disorder where the clotting factor is partially or completely missing in the blood.
Haemophilia is a genetic bleeding disorder where an essential blood clotting factor is either partially or completely missing. In Haemophilia A, Factor VIII is missing and in Haemophilia B Factor IX is missing. Predominantly affecting boys, haemophilia can be severe, moderate, or mild based on the level of clotting factor in the blood.
In India, genetic disorders like this are not considered public health priorities, leading to severe living conditions for those affected and their families by this disorder. A study across five haemophilia clinics in the country found that disability rates were higher and more prevalent among those belonging to a low socio-economic status. Indian haemophiliacs face many challenges that affect their lifespan and quality of life: lack of awareness, insufficient infrastructure for diagnosis and treatment, inadequate availability of anti-haemophilic factors, lack of subsidised care and insurance support, and more. Most families incur heavy out-of-pocket (OOP) expenditure.
Tiara provides life-saving anti-haemophilic factors free of cost to improve the quality of life of affected children. We also provide scholarships to build a bright future for these children raise awareness among the community to enhance social integration.
Multidisciplinary Clinic for Haemophilia warriors
Children with haemophilia, called our H-warriors, need to be closely monitored with plenty of follow ups to ensure a good quality of life. We organise multidisciplinary clinics to provide doctors and parents with an opportunity to meet and update each other on the progress of our little H-warriors. These clinics have haematologists, orthopaedic specialists, and physiotherapists to provide all-round care. Parents can bring up concerns or questions and doctors can then help them understand and adapt better.
Von Willebrand Disease
VWD is a genetic bleeding disorder caused when the clotting protein von Willebrand Factor (VWF) is missing or does not work the way it should. It is the most common inherited bleeding disorder. It affects both males and females. We sponsor the costs of the VWF Complex for children with VWD. They are also eligible for support under our other haemophilia programmes.