NEW YORK, NY. September 15, 2014 – 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.”
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.
Watch video of Panel 1 speakers: Dr. Richard Furie; Dr. Meggan Mackay; Preeya Nandkumar; Kaamilah Gilyard
Watch video of Panel 2 speakers: Dr. Anca Askanase; Rachel Drolet; Dr. Lisa Imundo; Kaamilah Gilyard
Click here for a listing of exhibitors that participated in the Fair and the studies seeking volunteers.