Over 200 patients, families, physicians and scientists came together under one roof last Friday, Sept. 12, 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 from eight of New York City's leading institutions, sharing experiences, ideas and needs, and learning about more than 80 opportunities to participate in studies to help transform patients’ lives.
Margaret Dowd, LRI president and CEO, said, "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."
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 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.