Raising rare disease awareness is incredibly important – not just to spur research, but to validate the experiences of those within this community. Around Rare Disease Day on February 28, the community rallies together to champion this awareness and education. But it is necessary to continue this discourse throughout the year. According to an article in Dev Discourse, the Organization for Rare Diseases India (ORDI) held a special event in Delhi on March 12, 2023 called RaceFor7 designed to amplify awareness.
More about RaceFor7
The name was chosen specifically for this cause. RaceFor7 was 7 km (4.34 miles) and involved running, biking, and walking. There are over 70 million estimated people living with rare diseases in India. ORDI notes that many of those affected are children, some of whom will not see their fifth birthday. It takes on average around 7 years to receive a rare disease diagnosis. Finally, RaceFor7 wanted to raise awareness of over 7,000 rare diseases (though recent estimates place the amount of known rare diseases above 10,000)! While the main race took place in Delhi, 12 additional cities across India also held events.
Due to the coronavirus pandemic, RaceFor7 has been a virtual event for the last few years. This year, ORDI was officially able to hold a live, in-person race. Outside of encouraging participants, the event also raised awareness of rare disease causes such as prenatal testing, newborn screening, precision healthcare, insurance issues, and patient-focused drug development. Additionally, ORDI advocated for increased access to local, state, and international resources for families within the rare disease sphere.
These are incredibly important issues. Rare disease places an incredible social, financial, medical, emotional, mental, and physical burden on patients. Finding ways to overcome hurdles and provide more targeted care would be huge for this community.
Learn more about RaceFor7 and the push to keep the momentum going for rare diseases. If you know of any other events designed to raise rare disease awareness, tweet at us and let us know!
