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2014

RARE Science Brings New Hope To Patients With Rare, Neglected and Orphan Diseases

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Research Based Non-Profit Will Use Integrated Data Approach To Identify Therapeutics For Rare Disease Patients With Few or No Treatment Options

SAN DIEGO, Sept. 16, 2013 /PRNewswire-USNewswire/ -- CEO and Founder of RARE Science, Dr. Christina Waters, announced today the launch of a new research based non-profit organization developing an integrated data system that serves the unmet medical needs of patients with rare, orphan and neglected diseases. RARE Science has attracted world renowned researchers from leading institutions including Sanford-Burnham Medical Research Institute, Salk Institute, UCSF, UCSD and Feinberg School of Medicine, Northwestern University.

Dr. Waters will be delivering the collaborative non-profit's first public presentation on Saturday, September 21, 2013, from 10:30am–11:30am, in the Commodore Room at the Balboa Bay Club Resort in Newport Beach, CA.  The presentation is being sponsored by Global Genes | RARE Project, a global rare disease advocacy organization, which is holding its annual Tribute to Champions of Hope™ Gala that evening to raise funds and awareness for rare and genetic diseases. 

"Individualized medicine holds the key to finding treatments and cures for rare diseases," said Dr. Christina Waters, CEO and Founder of RARE Science.  "Patients suffering from rare diseases don't have time to wait for a 15 year drug development program when systems based approaches using widely available approved drugs and combinations can find therapeutic solutions today."

The RARE Science research team and its collaborative partners are leaders of multiple scientific disciplines and will drive the integration and analysis of patient data. "This approach will allow us to discover new solutions not only for patients but enables us to leverage discovery in one disease across others of similar biology," added Dr. Waters.

Approximately 30 million people in the U.S. are affected by rare diseases, with over 250 million people impacted worldwide.  An estimated 50 percent of rare diseases are found in children and 30 percent will not live to celebrate their fifth birthday.

About RARE Science

RARE Science is a non-profit research organization whose mission is to accelerate identification of therapeutic solutions for patients of rare, neglected and orphan disease.  The organization invests both directly and through partners into internal research activities that integrate "omic" methods and systems technologies to elucidate new therapeutic strategies.  Funds raised for research in each particular disease will be applied to identify therapeutic solutions for that specific disease and to expand value of the discovery to related diseases through its computational platform. For more information, contact info@rarescience.org.

About Global Genes | RARE Project

Global Genes | RARE Project is a leading rare and genetic disease patient advocacy organization. The Foundation's mission is to unify the international rare and genetic disease community by providing connections and resources to ease the burdens of affected patients and their families.  Recognized worldwide by the Blue Denim Genes Ribbon™, Global Genes | RARE Project unites experts, advocates and patients of all ages to stand together in hope for treatments and cures for the estimated 7,000 rare and genetic diseases that impact approximately 30 million Americans and over 250 million people worldwide. For more information, visit http://globalgenes.org/.

SOURCE Global Genes Project



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