Online National Resource Center on Lupus Launched
Today, the Lupus Foundation of America unveiled the National Resource Center on Lupus (Resource Center) – a one-stop resource for all things lupus. The Resource Center aims to connect, empower and educate those whose lives are impacted by this devastating and unpredictable disease by providing trustworthy, reliable and high-quality resources, programs and emotional support services.
“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,” said Sandra C. Raymond, Lupus Foundation of America President and CEO.
“The content available on the National Resource Center on Lupus is based on forty 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.”
The results from the Lupus Foundation of America’s National Needs Assessment on Lupus, conducted last year, took a broad, yet deep look at the very specific needs and wants of the diverse lupus patient, caregiver and health care professional communities. Based on this input, the Lupus Foundation of America developed more than 600 medically-reviewed resources in English and Spanish about all aspects of lupus. New content will be added on a regular basis and will be developed in response to the needs identified.
Visitors can easily find what they are looking for – by topic, relationship to lupus, category or keyword search. Children and teens with this disease will find specialized content created just for them based on their input and unique perspectives.
Health care professionals will be able to easily identify disease specific information, tools and education programs for themselves and 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, M.D., M.P.H., Medical Director of the Lupus Foundation of America and Chair of the Department of Medicine and Co-Director of the Lupus Center of Excellence at West Penn Allegheny Health System.
“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.”
The Resource Center provides support to people who might have lupus, people who are newly-diagnosed or people living with lupus.
Examples of resources available include:
- Signs and Symptoms of Lupus: Describes signs and symptoms of lupus for people who think they might have lupus.
- Newly-Diagnosed: Provides expert advice for people who are newly-diagnosed on how to manage lupus.
- Personal Stories: Shares personal stories about people with lupus who have overcome the odds through perseverance, inspiration and hope.
- Recipes: Shares healthy, low-sodium recipes that are flavorful and delicious.
- Young Adults: Offers support, advice and information for young adults.
Resource Center visitors can sign up to receive regular updates and news by visiting resources.lupus.org.