On Rare Disease Day on Monday, Rainbow Children’s Hospital honoured parents of children who braved odds to ensure treatment for their children.
To carry forward the theme of “Share your colours” this year, the hospital had invited the children under treatment to raise awareness about the need to diagnose the condition and seek treatment for better outcomes.
Annually, the last day of February is recognised as Rare Disease Day. Across the world, 7,000 rare diseases with 300 million people are affected. As much as 72% of the diseases are genetic.
R. Ganesh, senior consultant - general paediatrics and paediatric metabolic disorders at the hospital, said, “There are a lot of challenges faced by the medical fraternity in managing rare diseases like lack of awareness about rare diseases in the general public and in the medical fraternity which may result in delayed treatment/misdiagnoses. The diagnosis process for a rare disease may result in multiple outpatient consult visits or admissions to the hospital, frequent blood sampling, and subject to X-rays and scans, thereby taking a long time to establish the diagnosis.”
With no support from insurance companies for these ailments, families often struggle to make ends meet and rely on non-governmental organisations to fund their children’s treatment, he said.
The hospital sought crowd-funding through online resources besides tapping conventional NGOs such as Rotary Clubs, he added.
