The content of the new resource center is based on the results from the LFA’s National Needs Assessment on Lupus, a survey conducted last year. After studying the findings of the survey regarding the specific needs of lupus patients, caregivers and healthcare professionals, the LFA created more than 600 medically-reviewed resources in English and Spanish about different aspects of lupus.
“The National Resource Center on Lupus was a vision that started a decade ago to bring together in one place the best resources and information available on lupus,” Sandra C. Raymond, president and CEO of LFA, said in a press release.
“The content available on the National Resource Center on Lupus is based on 40 years of experience and insights that we have gathered working closely with world-renowned lupus experts and the lupus community, as well as from a comprehensive research effort conducted by the organization,” she added.
The online center aims to connect, empower and educate patients, healthcare professionals, family members and all those whose lives have been touched by lupus. It will provide reliable, informed resources, programs, and emotional support services.
New content will be added on a regular basis in response to needs identified over time.
Visitors can search within four main categories of the resource center — Understanding Lupus, Diagnosing Lupus, Living with Lupus and Research on Lupus — or search by topic, relation to lupus, category or keywords.
Special content will also be created for children and teens with lupus, to include their unique perspectives and input.
Healthcare professionals will also be able to easily identify disease-specific information, tools and programs to learn more about themselves and to guide their patients.
“When we urge our patients to take ownership of their health, it is incumbent upon us to ensure that they have the right resources,” said Susan Manzi, MD, MPH, medical director of the LFA. “The Resource Center provides a comprehensive and ever-growing repository of medically-reviewed content provided in a variety of formats that physicians can feel confident sharing with patients and their families.”