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. 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.” Gooty encourages others to follow suit and join in the Rare Disease Day events: “In the race of life, all we need is self confidence, courage, and faith in our very own abilities to win the race and run that extra mile. The miracle isn’t that ‘I finished.’ The miracle is that ‘I had the courage to start.’ Let’s Go. Let’s Racefor7 as a team. Together everyone achieves more!!!” In addition to Kakani and Gooty, the Washington D.C. race welcomes a host of great speakers. Among the legends of rare diseases advocacy and research are chief guests Marshall L. Summar, MD, Director of Rare Disease Institute, Children’s National Medical Center at Washington, D.C. and Chairman of the board of directors at the National Organization for Rare Disorders (NORD), Stephen Groft, Pharm.D., of ICORD and Frank Sasinowski, MS, MPH, JD, Vice Chair of EveryLife Foundation. Summar expresses excitement for the event, stating, “What a great event and what a way to bring the rare disease communities of the U.S. and India together.” Additionally, the Washington race welcomes Monica Weldon, President, CEO and Founder of Bridge the Gap – SYNGAP Education and Research Foundation, as a prolific patient advocate. “It’s imperative that all rare disease organizations take an active role in supporting initiatives that reach more than our local communities. We have the potential to reach the world for rare diseases when we all come together to support one another,” says Weldon. BV Jagadeesh, serial entrepreneur, angel investor and philanthropist, will be Summar’s counterpart in the San Francisco Bay Area location. “I am proud to be associated with ORDIUSA and thrilled to flag the race at Fremont,” says Jagadeesh. Although ORDIUSA is now calling for racers, there are still other ways to support the cause. Sponsorship slots and support opportunities are still available for their growing list of backers which currently includes Diamond sponsor Shire (now Takeda) and Silver sponsors including Amicus Therapeutics, Beaini Financial Solutions, BioIT Solutions, Bluebird Bio, Blue Eye Soft, NETE Solutions, SynergyBIS, Ultragenyx Pharmaceutical. Promotional partners supporting the Racefor7USA include: AIMS INDIA, Biobuzz, Global Genes, International Institute of Corporate Social Responsibility (IICSR), International Rare Diseases Research Consortium (IRDiRC), Lead India Foundation, NORD, RareCast, Rare Diseases International (RDI),UNDCA, and WHEELS Global Foundation. Local promotional partners include Srinivas Patangi Seshadri and team in Bay Area, Shashi Nadig and team at Greenville, S.C., Gopal Ponangi of Shubham Foundation, DJ Utobia, iWomen’s Net, Shuba Gunapu of Ragamala Music Academy, Kasturi Media, and BengaluruVoice of Bay Area Radio Zindagi 1170AM. Partners like BioBuzz’s Chris Frew offer support and encouragement to racers. “We’re proud to support an event like Racefor7USA that represents a global community of advocates who want to make more medicines available for the thousands of unmet rare diseases. We believe that the power of community and the awareness that this brings can generate the much needed momentum to bring new cures to the patients who need them most,” says Frew, whose company will assist in the national media coverage for the event. For partnership and promotional opportunities, or to register for the run, contact event management at [email protected] or visit https://www.racefor7usa.com. To stay up-to-date on news and information about the global rare disease community, sign up for the newsletter at www.ordiusa.org or connect with us on social media channels Facebook, Twitter, YouTube and LinkedIn. Media Contact: Nara Govindarajan, [email protected] / 571.294.5913 ORDI is a member organization of various national and international consortia such as NORD, Global Genes, IRDiRC, ICORD, RDI, and UDNI. ORDIUSA is a 501(c)(3) non-profit public charity with the vision to foster collaborations between patient advocacy groups and researchers in USA, India and other countries to help accelerate clinical research, trials and therapy access across borders. ORDIUSA aims to be a catalyst in making rare diseases as easily diagnosed and treated as common diseases like diabetes, hypertension, TB and AIDS. ORDIUSA’s mission includes:
- Connecting patients living with rare diseases in India and USA with patient advocacy groups, with research or clinical trials and international Consortia such as IRDiRC, Globalgenes, and UDNI.
- Accelerating diagnosis and treatment options for patients with rare diseases through multinational public-private partnerships.
- Exchange and mutual co-operation for public health policy development/implementation Such as Rare Disease Policy and Orphan Drug Policy between USA, India and other countries.
- Organizing national and international conferences to bring all stakeholders of rare diseases together for debates and discussions.
- Facilitate cross-border research collaborations.
VIDEO LINK: https://www.youtube.com/watch?v=LdHX4GzFpSA
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