Lupus Research Institute Launches NYC's First Lupus Trials Fair

NEW YORK, Sept. 15, 2014 /PRNewswire/ -- Over 200 patients, families, physicians and scientists came together under one roof Saturday to learn, interact and participate in the drive for better lupus treatments at New York City's first Lupus Trials Fair launched by the Lupus Research Institute (LRI) and the S.L.E. Lupus Foundation.  Attendees interacted directly with researchers at eight of NYC's leading institutions -- sharing experiences, ideas and needs and learning about more than 80 opportunities to participate in studies needed to transform patient lives. 

LRI President and CEO Margaret Dowd emphasized, "Everyone in the lupus community – patients, scientists, researchers, healthcare providers, bio-pharmaceutical industry – each plays a role if we are to develop safer, effective therapies while moving toward prevention and a cure.  Only one drug has been approved for lupus in over 50 years.  But more promising treatments for lupus are in development than ever before, and we need all hands on deck to get them tested and approved. Lupus patients hold the greatest power to accelerate new drug development; it is their perspective, engagement and leadership that make the greatest difference. Without patient participation, there is no clinical research." 

Why Participate?

Presenters explained the different types of trials, many of which do not involve experimental therapies, as well as the critical need for volunteers with and without the disease. Attendees learned how taking part in a clinical study allows patients to take an active role in their own healthcare,  receive quality care from top professionals and gain access to cutting-edge treatments while advancing lupus research. 

The urgent need for better treatments was powerfully highlighted in the new photo exhibit Lupus through the Lens previewed here before its presentation at the upcoming American College of Rheumatology annual meeting. Created by patients as a means of therapeutic expression, the photos visualize the devastation of what is often an invisible disease.  

Lupus patient Kaamilah Gilyard strongly encourages others to get involved. "Participating in a clinical study makes me feel both hopeful and helpful. I know I'm doing something truly meaningful that could save my own life and the lives of so many others."

The NYC Lupus Trials Fair is the first of an expanded program planned in the country's major cities and high-population states through members of LRI's National Patient Coalition.  Formed by patients and families, the Coalition now marks 10 years of successful advocacy, education, and fundraising for lupus research.

As additional Fairs are scheduled, announcements will be posted on LupusTrials.org, the LRI's dedicated website for education on clinical research.  The customized search tool on the website helps patients find lupus studies that might be right for them to discuss with their physicians. 

About Lupus
Systemic lupus erythematosus (SLE), or lupus, is a chronic, complex and serious autoimmune disease affecting more than 1.5 million Americans, primarily women in the prime of their lives. In lupus, the immune system, which is designed to protect against infection, creates antibodies that attack the body's own tissues and organs—the kidneys, brain, heart, lungs, blood, skin, and joints. Lupus is difficult to diagnose, difficult to treat, and a leading cause of premature cardiovascular disease, kidney disease and stroke among young women.

About the LRI
The Lupus Research Institute (LRI), the leading private supporter of novel research in lupus, pioneers discovery and champions scientific creativity as it demonstrates the power of innovation to transform patients' lives. Founded by families and shaped by leading scientists, the Institute has generated over $170-million for cutting edge lupus research, delivering many of the most pivotal scientific breakthroughs of the past decade. With its National Patient Coalition of regional lupus organizations, the Lupus Research Institute improves patient care by promoting research awareness, education and advocacy as it advances toward Life Without Lupus. For more information, visit www.lupusresearchinstitute.org.

SOURCE Lupus Research Institute

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