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New Resource Center – One-Stop for All Things Lupus

May 30, 2017
A keen understanding of the education and support needs of all those impacted by lupus was critical in developing our recently-launched National Resource Center on Lupus (Resource Center).

People with lupus need reliable and clear health education information to help live a quality life. Most importantly, they want a source that they can TRUST and return to throughout their journey with lupus for medically-reviewed information and resources to guide them.

We want to share our story of how we developed this digital hub for the lupus community and what we learned along the way.

More than a decade ago, we began seeing an increase in the number of health educator inquiries on a variety of topics related to lupus—from questions about how to manage finances to how to provide support to caregivers.

During this time, we have observed a dynamic shift—people wanted to become informed and empowered to manage their care with guidance from their team of healthcare professionals.

Yet managing lupus is complex, and people with the disease have different needs and preferences for receiving health information.

Raising the money to develop the Resource Center wasn’t easy, but in the meantime, we conducted research and gathered insights to inform its development.   Even though we had worked with the lupus community for decades, this research allowed us to dig deeper and learn more, so we could better respond to their needs.

We also examined trends in how communications and technology is evolving and in how the Internet is being used to obtain health information. We looked at the types of information the lupus community preferred to receive from us to help them manage their disease, and what they preferred to receive from a support group, caregiver, or healthcare professional.

Ultimately, we secured funding through a U.S. Centers for Disease Control and Prevention grant, and were able to turn our long-standing goal to develop the National Resource Center on Lupus into a reality.

We applied our research learnings and insights to develop more than 600 medically-reviewed resources in English and Spanish about all aspects of lupus. Once a prototype of the website was built, we worked with members of our constituent base to test it and help us improve it. The user testing and feedback we received reassured us that the information and resources it contained addressed unmet needs of the lupus community.

The Resource Center aims to educate, empower and connect all people affected by lupus by providing access to trustworthy, reliable and high-quality health information and resources.

I am proud of the work we have done in the lupus community. Now we have a home for all things lupus to improve the journey of those affected by this brutal disease. I encourage you to check out the website at resources.lupus.org.

 

Sandra Raymond, President and CEO, Lupus Foundation of America