More Research Needed for Rare Diseases
With research, possibilities are limitless
India, February 26, 2021: 7000 known rare diseases, an estimated 300 million rare disease patients worldwide of which 70 million are in India, yet most have no treatment / very limited treatment options available. On Rare Disease Day 2021, ISCR (Indian Society for Clinical Research) calls upon all research stakeholders to invest in research across the spectrum so that rare disease patients and their caregivers can look forward to a better quality of life. Rare Disease Day takes place on the last day of February each year to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives.
Noting the need for more research into rare diseases, Chirag Trivedi, President, ISCR said, “According to available data, 1 in 20 people will live with a rare disease at some point in their lives. The large number of rare disease patients living without access to treatment and management of their conditions either because of lack of awareness, lack of appropriate diagnosis and lack of treatment options should be a wake-up call for the clinical research community.” Rare Disease Day is a day to remind researchers, universities, students, companies, policymakers and clinicians to do more research and to make them aware of the importance of research for the rare disease community.
The UN 2030 Agenda and it's Sustainable Development Goals is addressing the needs of patients that are diagnosed with rare disease 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.
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.
About Rare Disease Day
Rare Disease Day takes place on the last day of February each year. The main objective of Rare Disease Day is to raise awareness amongst the general public and decision-makers about rare diseases and their impact on patients' lives. The campaign targets primarily the general public and also seeks to raise awareness amongst policymakers, public authorities, industry representatives, researchers, health professionals and anyone who has a genuine interest in rare diseases.
About ISCR
The Indian Society for Clinical Research (ISCR) is an association of clinical research professionals that aims to build awareness of clinical research as a specialty in India and to facilitate its growth in the country while helping to evolve the highest standards of quality and ethics. To that extent, we are fully supportive of the initiatives undertaken by regulatory authorities to create a more robust and regulated environment in India for the conduct of clinical research and will continue to work very closely with different stakeholders in the development of regulations that will safeguard and protect patients in a clinical trial. \
