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

Thursday, February 21, 2019   (0 Comments)
Posted by: Andrea Guidi
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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 www.racefor7USA.com/registration. 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 www.racefor7usa.com.

 

 

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This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.

 

Updated in 2015 with a generous grant from Shire, Inc. 

 

This website was updated in 2015 with a generous grant from Shire, Inc. This website is an educational resource. It is not intended to provide medical advice or recommend a course of treatment. You should discuss all issues, ideas, suggestions, etc. with your clinician prior to use. Clinicians in a relevant field have reviewed the medical information; however, the Oley Foundation does not guarantee the accuracy of the information presented, and is not liable if information is incorrect or incomplete. If you have questions please contact Oley staff.
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