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Rare Disease Day 2022: Patients suffering from rare blood diseases

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  • Rare Disease Day 2022: Patients suffering from rare blood diseases

    Rare Disease Day is observed every year on 28th February. It is a globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with rare disease.

    Having affected about a fifth of the world population, the burden of blood-related rare diseases, especially Thalassemia is huge in India. Over 10,000 children are born with thalassemia major every year, and over 7,000 cases are diagnosed with aplastic anemia per year.

    A disease is considered rare by WHO when it affects one person out of 1000 or less. There are between 5000 and 8000 rare diseases, most of them genetic in nature and particularly impact children causing 35% of deaths before the age of 1 year and 10% between the age of 1-5 years and 12% between 5-15 years. Every country has their own definition of rare disease that suits their specific requirements, and according to the Indian Council of Medical Research (ICMR), a rare disease is one that affects one in 2,500 people or less in India.

    India in a bid to further its agenda as a welfare state has gone on to introduce the National Policy for Rare Diseases 2021 (NPRD) which is based on the principle of inclusion as enshrined in the constitution's directive principles of state policy. The policy is aimed at lowering the cost of treatment of rare diseases while increasing the focus on indigenous research and local production of medicines.
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    There are over 100 rare blood diseases, with an estimated 1 in 20,000 people being affected. The most common are leukemia, lymphoma and myeloma, which affect people of all ages. Many rare blood diseases are caused by mutations in the genes that control blood production. Symptoms can vary greatly from person to person, so it can be difficult to tell if someone is experiencing a rare blood disease.