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Ramesh Shankar
Wednesday, March 1, 2023, 08:00 Hrs  [IST]

Every year, Rare Disease Day is observed on the last day of February to raise awareness about rare diseases and their impact on patients' lives. It is a worldwide healthcare event, intending to bring together the patients suffering from rare diseases and create a community in which awareness of their rarity profile, their condition, their diagnosis and their treatment are discussed. The main goal of Rare Disease Day is to raise awareness among the public, healthcare professionals, policymakers, and researchers about the challenges faced by people living with rare diseases. The observance of Rare Disease Day every year is significant as it provides an opportunity for rare disease communities to come together and advocate for better care, treatment, and support for those affected by these conditions. Although all diseases can inflict tremendous suffering on patients and their family members, rare diseases pose more significant challenges than common disorders due to lack of proper treatments for these diseases. The families and caretakers are also affected due to the guilt of not providing proper support for the treatment, either due to the unavailability of proper drugs or due to the prohibitive prices of the rare disease drugs. The rare diseases often involve severe, progressive illness and disability and may lead to premature death. In addition, rare diseases frequently affect more than one organ system and require collaborative research structures. Further, being very rare, the treating healthcare team often misdiagnoses the patients due to overlapping symptoms seen with the common (non-rare) diseases. So, the observance of Rare Disease Day is important as it is the globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with rare diseases.

This year, Rare Diseases Day theme is ‘Share Your Colours’ (a continuation of the 2022 theme). It is a call to patients, governments, world leaders, and the concerned stakeholders in positions of power intending to remove the stigma around patients suffering from rare diseases and work collaboratively to raise neglected awareness about the challenges these patients face. A rare disease, often known as orphan disease, is a health condition of low prevalence that affects a small number of people compared with other prevalent diseases in the general population. World Health Organisation defines rare disease as an often debilitating lifelong condition or disorder with a prevalence of one or less per 1,000 population. There are over 7,000 rare diseases globally and about 450 of them have been reported in India. The most common rare diseases reported in India include haemophilia, thalassemia, sickle-cell anaemia and primary immuno deficiency in children, auto-immune diseases, lysosomal storage disorders such as pompe disease, hirschsprung disease, Gaucher’s disease, cystic fibrosis, haemangiomas and certain forms of muscular dystrophies. In such a background, raising awareness and generating change for the 300 million people worldwide living with a rare disease, their families and careers is extremely important. More importantly, the government should allocate sufficient fund to support the R&D of drugs meant for rare diseases. Certainly, the awareness of rare diseases and allocation of funding for the research of the same would benefit greatly for improvements in translational research. On the occasion, Sanofi Speciality Care has reaffirmed its commitment to rare diseases in India, stating that it will continue with its efforts in empowering the lives of patients with rare diseases by offering transformative healthcare options. Sanofi’s commitment is laudable which others can emulate.


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