Experts Ask for More Research for Patients on Rare Diseases Day
There are around 7,000 known rare diseases and an estimated 300 million patients suffer from such ailments worldwide. Most of the 70 million of these patients, found in India, do not have access to treatment or are left with very limited cure options.
On Rare Disease Day 2021, the Indian Society for Clinical Research (ISCR) called on all stakeholders to invest in research across the spectrum so that rare disease patients and their caregivers can look forward to a better life.
Rare Disease Day is celebrated annually on the last day of February to raise awareness among individuals and decision-makers about rare diseases and their impact on the lives of patients.
Underlining the need for more research in the field, ISCR President Chirag Trivedi said: “According to available data, 1 in 20 people live with a rare disease at some point in their lives. Large numbers of patients with rare diseases live without access to treatment and management of their conditions, either due to lack of knowledge, proper 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, students, businesses, legislators, and physicians to study more and to become aware of the importance of research to the rare disease community, experts said.
“The United Nations 2030 Agenda and its Sustainable Development Goals are addressing the needs of patients diagnosed with rare diseases through their commitment to leave no one behind. In addition, the future goal of Rare Disease Day over the next decade would be to increase equity for people living with a rare disease and their families, “said a statement issued by the ISCR on Sunday.
“Research can lead to the identification of previously unknown diseases, increase our understanding of diseases, allow physicians to provide a correct diagnosis, lead to the development of new innovative treatments and possibly even a cure, reduce costs to healthcare systems. and improve the quality of life of patients and their families ”, he added.
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