WASHINGTON - 01/24/2019 (PRDistribution.com)
Rare disease research needs global support. So, too, do the events planned for Rare Disease Day, 2019.
On Sunday, the 24th February, 2019, the Organization for Rare Diseases India in USA (ORDIUSA) and the Organization for rare diseases India (ORDI) are holding Racefor7 in the U.S. for the third year in a row. The 7-kilometer walk/run was established to raise awareness of the over 7,000 medical conditions collectively known as “rare diseases.”
A rare disease, as defined by the World Health Organization, occurs in fewer than 6.5 to 10 people per 10,000. This translates to more than 350 million people worldwide who suffer from rare diseases and their co-morbid conditions. Because of the rarity of these diseases among the general populace, patients on average take 7 years to find a diagnosis and orphan drugs have a 7-year market exclusivity, an incentive provided by the US Orphan Drug Act of 1983. This is the origin of the name Racefor7: 7,000+ conditions, average 7 years to diagnosis, 7-year drug exclusivity and hence 7 Km.
The walk/run will occur at eleven cities in India this year and four cities in the U.S. including Washington, Dallas, Greenville, S.C., and San Francisco (Fremont, Calif.). Dallas and Fremont are new locations for the run this year. 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.
“I am really excited to wave the flag to start this year’s Racefor7. What a great event and what a way to bring the rare disease communities of the U.S. and India together,” says Marshall L. Summar, MD, Director of Rare Disease Institute, Children's National Medical Center at Washington DC and Chairman of the board of directors at the National Organization for Rare Disorders (NORD).
Last year, the Washington race starter was Dr. William Gahl, Clinical Director of the National Human Genome Research Institute (NHGRI/NIH) and Director of the NIH Undiagnosed Diseases Program.
Serial entrepreneur, angel investor and philanthropist, BV Jagadeesh, will start the race for the San Francisco Bay Area location. “It’s very rare to see an organization or group of people paying attention to rare diseases, something all us tend to ignore. When you realize there are roughly 350 million people suffering from one of more than 7,000 rare diseases, it’s time awareness is created and also help save lives from these diseases. I am proud to be associated with ORDIUSA and thrilled to be part of the race at Fremont,” says Jagadeesh.
Patient advocate and returning runner, Benita Talati says coming back is important to her because “my diagnosis of Ehlers Danlos Syndrome after 33 years is still considered a rare disease. Hypermobile EDS is more prevalent than previously thought and people need to be aware that seemingly unconnected health issues may in fact be a case of mixed connective tissues-Ehlers Danlos Syndrome, Marfan’s, Loeys-Dietz, Sticklers Syndrome or any of the more than 200 mixed connective tissue diseases.”
ORDIUSA is still looking to fill sponsorship slots and support for their growing list of backers which currently includes companies like Shire, Ultragenyx Pharmaceutical, Beaini Financial Solutions, BioIT Solutions, Bluebird Bio, Blue Eye Soft, and SynergyBIS. The event is promoted and supported by partners including AIMS India, BioBuzz, International Institute of Corporate Sustainability and Responsibility (IICSR), United National Diversity Coalition of America (UNDCA), and WHEELS Global Foundation.
“The growing support for our event, Racefor7USA, by prominent rare disease-focused, publicly-funded biopharmaceutical companies validates the importance of our organizational mission and approach for patients with rare diseases. 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. “While we do have a number of great speakers and support from prominent groups, more support would be better to continue spreading the message -- and the run -- as far as we can get it. We will be presenting the case of rare diseases to corporate leaders in attendance at the inaugural IICSR sustainability dialogue hosted by Tata Sons at Washington tomorrow. We hope more multinational corporations will recognize the importance of connecting the various stakeholders of rare diseases across borders as a catalyst to accelerate clinical research.” Rajasimha says.
Rajasimha launched his monthly Indo-US rare diseases newsletter to inform, engage, and bring together stakeholders of rare diseases from the U.S. and India closer. Readers can subscribe to the newsletter from the homepage at https://www.ordiusa.org.
Media Contact: Nara Govindarajan, [email protected] / 571-294-5913
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, NORD, RDI 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.
ORDI is a member organization of various national and international consortia such as NORD, Global Genes, International rare diseases research consortium (IRDiRC), ICORD, Rare Diseases International (RDI), and UDNI. ORDI will be collaborating with UDNI and a number of organizations in India including Sir Ganga Ram Hospital, CSIR Institute for genomics and integrative biology - a Govt of India undertaking to bring key stakeholders of rare diseases together at the “7th International Conference on Rare & Undiagnosed Diseases: Addressing Patient Needs for Rare Disorders in India” at New Delhi, IN from April 13 - 15, 2019. Registration is now open on the conference website: http://rnud.in/.