About the Event:
IndoUSrare is partnering with the India Association of Greenville (IAG), to organize a Health Initiative Month with the aim of raising awareness for rare diseases and to make the Greenville community fit and healthy.
The month-long initiative will begin on 10th April 2021 and end on 9th May 2021.
We encourage the Greenville community to participate in one of the 3 categories listed below:
- Run every day of the Health Initiative Month – Entry Fee $50
- Run on weekends (8 days) of the Health Initiative Month – Entry Fee $35
- One day Health Run on 9th May 2021 – Entry Fee $20
Community members of all age groups – adults and children alike are encouraged to participate. Children below the age of 16 years have to be accompanied by an adult and can register using an Add-On ticket.
How can you participate?
STEP 1: Register for Roar4Rare Health Initiative Month – you can choose from the 3 categories available. You can register on behalf of your kid(s) as an add-on ticket to your own.
STEP 2: Run, jog or walk a distance and time of your choice between Saturday, 10th April 2021 and Sunday, 9th May 2021. You can choose a time and place that is convenient for you. You could even use a treadmill. If you choose to walk/run outdoors, ensure to keep recommended physical distance from others. You can track your run using any device of your choosing.
STEP 3: Post your photos and screenshots on social media and tag @indousrare and @myiag in your run photos with the hashtag #ROAR4RARE
STEP 4: Come together on the final day, 9th May 2021 for a 5K walk/run. Details of the final day event will be emailed to you closer to the event date.
This summer, let’s put on our running shoes and get moving to get fit and raise awareness and support for the 7000+ rare diseases.
Runners in each category will be given a memento/award on the last day of the event.
What are Rare Diseases?
A disease is considered rare if it affects fewer than 200,000 people in the USA or 500,000 people in India. There are over 7000 named rare diseases that collectively affect over 350 Million people worldwide making them as common as diabetes. Over 80% of rare diseases are genetic and 50% affected are children. Rare patients face unique challenges ranging from difficulties in diagnosis, non-existence of therapies and cures, to lack of social and government support. It takes an average of 7 years to get a diagnosis. Only 5% of rare diseases have treatments.
The advent of gene therapies and incentives in the development of orphan drugs has led the once-neglected field of rare diseases to become a thriving and exciting area for research, accelerating diagnosis and finding therapies. It is a vibrant and interdisciplinary field that builds upon shared core resources and services to tap into the commonalities among the thousands of rare diseases.
IndoUSrare is a non-profit 501(C)(3) public charity organization on a mission to accelerate affordable orphan therapies for rare diseases by catalyzing cross-border collaborations between stakeholders of a rare diseases in the USA and India. https://indousrare.org