Experts say that more than 70 million Indians are affected by rare diseases every year, but only one in 10 receives disease-specific treatment. Despite their prevalence in a small segment of the population, they are emerging as a public health challenge in the country.
Rare Disease Day is an observance held on the last day of February to raise awareness about rare diseases and improving access to treatment and medical representation for individuals with rare diseases and their families.
The health ministry recently formulated the National Policy for Rare Diseases 2020, an amended version of the earlier draft released in 2017. Although the new policy mentions treatment as being available, it is only limited to certain categories. There is a need to include other diseases and ensure that more focus is given to R&D in this area, apart from creating awareness about these diseases, say experts.
A rare disease is a health condition that has a low prevalence and affects a small number of people. The most common conditions include Haemophilia, Thalassemia, Sickle-cell Anaemia and Primary Immuno Deficiency in children, auto-immune diseases, and Lysosomal storage disorders.
Ashish Dubey, COO and co-founder, Redcliffe Life Sciences, said given the prevalence of rare diseases and the fact that the research on their treatment is ongoing, it is important to ensure that every mother undergoes genetic screening at an early stage.
Dr K K Aggarwal, president, Heart Care Foundation of India (HCFI) and Confederation of Medical Associations of Asia and Oceania (CMAAO), said, “Treatment options for rare diseases are also available in the private sector and there is a need to extend funding to include support for follow-up therapy.
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