Thousands marching against rare diseases; Still time to join Racefor7 2019

WASHINGTON D.C. – 02/13/2019 (

The Racefor7 Rare Disease Day run on Sunday, the 24th February is approaching the starting mark. Will you be joining them?


Traveling from Birmingham, Ala. to D.C., Swapna Kakani will be there. She is intimately aware of the struggle for patients with rare diseases; She is one herself battling a rare disease called short bowel syndrome. Kakani is standing up and lacing her sneakers for this run both for herself and for other patients of these often-overlooked diseases.


“As a rare disease advocate, I am excited to be part of the Washington D.C. Racefor7 event linking USA with India, not only because of my own journey and ethnic background among both countries, but also because it is a unique event bringing awareness to individuals with rare diseases across the world,” Kakani says. “The event highlights both country’s rare disease advocacy efforts and initiatives. Everyone of all ages and abilities should attend because this is a way to show what we can accomplish when we diminish our differences, and instead unite around our similar experiences and needs.” Her journey is one of many inspiring stories that will be highlighted during the run.


The race, slated for Sunday, February 24, 2019 will be occurring simultaneously in eleven cities in India this year and four cities in the U.S. including Washington, Dallas, Greenville, S.C., and Fremont, Calif (San Francisco Bay area). Dallas and Fremont are new locations for the run this year. The walk/run will start at 9 AM local time in each location. Racefor7 will be part of events happening worldwide the week of February 24-28, including Rare Disease Week on Capitol Hill in Washington, separately organized by the Rare Disease Legislative Advocates and supported by EveryLife Foundation.


Event organizers are looking for diverse community engagement and registrants for the event. Walkers and Runners are asked to register online ahead of the event at Each registrant will receive a t-shirt, a bib with a rare disease name on it, a finisher medal, breakfast bars, water or gatorade. Youth under 18 years of age can register for free. All registrants can sign a waiver online. The only approved website for registration is Organizers are not responsible for any registrations or tickets purchased outside of this website.


The locations for the run have been selected: In D.C., the run will start southeast of the Washington Monument at the National Sylvan Theater; The race in Greenville will begin near the Kroc Tennis Center; In Dallas, runners will gather at the Frisco Commons Park. In the San Francisco Bay Area, racers will meet at Quarry Lake Regional Park (Fremont) for the event.


As was previously announced, this 7-kilometer walk/run sponsored by the Organization for Rare Diseases India in USA (ORDIUSA) and the Organization for Rare Diseases India (ORDI) intends to increase awareness of the over 7,000 medical conditions collectively known as “rare diseases.” The event is in its 3rd year.


The World Health Organization defines a rare disease as one that occurs in fewer than 6.5 to 10 people per 10,000. More than 350 million people worldwide suffer from rare diseases and their comorbid conditions. “We are collaborating with many existing rare disease organizations in US and India to fill some of the gaps and unmet needs of the rare disease communities globally,” says event host and social entrepreneur Harsha Rajasimha, M.S., Ph.D., Co-Founder and board director of ORDI, ORDIUSA and co-director of the Rare Diseases Systems Biology Research Initiative at George Mason University.


Rajasimha recently spoke with Daniel Levine at RAREcast about the importance of community engagement and support for the cause. “This event really brings visibility to otherwise overlooked conditions. We are lucky to have a number of great speakers and support from prominent groups. There needs to be more clinical research and there is growing recognition of the global public health concerns among multinational corporations and scientific institutions,” Rajasimha says. The public benefit event is being freely promoted by various radio channels at the four venues, including by Kasturi Media in Bay Area, Radio Caravan in Dallas, Bolly 102.9 FM in Washington and other channels.


Rajesh Gooty, Founder and President of United National Diversity Coalition of America (UNDCA)will be speaking at the Washington race. Gooty is a highly regarded community leader who supports the cause vigorously. “We run for very special patients: Those that endure and conquer the rarest of rare diseases, extraordinarily,” says Gooty. “Team UNDCA is proud to partner, volunteer and support Racefor7. We need everyone’s support to win this race.”

Read the complete article here: News Article

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