Rare Diseases Day: Experts call for more research for patients’ welfare

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There are round 7,000 identified uncommon ailments with an estimated 300 million sufferers affected by such illnesses worldwide. Most of the 70 million of such sufferers, who’re in India, have both no entry to remedy or are left with very restricted choices for treatment.

On Rare Disease Day 2021, the Indian Society for Clinical Research (ISCR) referred to as upon all stakeholders involved to put money into research throughout the spectrum in order that sufferers with uncommon ailments and their caregivers can sit up for a greater life.

Rare Disease Day is noticed yearly on the final day of February to boost consciousness amongst folks and decision-makers about uncommon ailments and their affect on sufferers’ lives.

Underscoring the necessity for more research within the area, ISCR President Chirag Trivedi stated: “According to the available data, 1 in 20 people live with a rare disease at some point in their lives. A large number of rare-disease patients are living without access to treatment and management of their conditions either because of lack of awareness, appropriate diagnosis and treatment options. This should be a wake-up call for the clinical research community.”

Rare Disease Day is a day to remind researchers, universities, college students, corporations, policymakers and clinicians to do more examine and make them conscious of the significance of research for the uncommon illness group, the consultants opined.

“The United Nations 2030 Agenda and its Sustainable Development Goals are addressing the needs of patients that are diagnosed with rare diseases through their pledge to leave no one behind. Furthermore, the future goal of Rare Disease Day over the next decade would be to increase the equity for people living with a rare disease and their families,” an announcement, issued by the ISCR, stated on Sunday.

“Research can lead to the identification of previously unknown diseases, increase our understanding of diseases, enable doctors to provide a correct diagnosis, lead to the development of new innovative treatments and possibly even a cure, reduce costs for healthcare systems and improve the quality of life of patients and their families,” it added.

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