The Long Awaited Unveiling of National Resource Center on Lupus

Just this week, the Lupus Foundation of America unveiled their powerful tool for lupus patients around the world; The National Resource Center on Lupus. 

I was honored to be asked as someone to have a "first look" prior to the unveiling, and to take part in a webinar that allowed ambassadors around the country to become accustomed to the user-friendly platform to get the most out of the center. The main takeaway was the mission of the foundation with this center, which is to empower, educate and relate.

The LFA strives to create content that will empower their audience to feel as though they are able to take action in their community and with their own health. By being more aware of coping strategies, treatment options and more, patients will become their own advocates while approaching an unsettling disease. This was accomplished through the center by education and awareness, because many are misinformed about the manifestations of lupus. It dispels myths and answers any question that may come to the mind of a lupus patient, family member/friend, or health care provider. Vital for the psyche of patients, the LFA relates and connects patients to other patients in the country by giving raw content of personal stories offered to the foundation to assure others that they are not coping by themselves.

I think of this as a home base for my day-to-day questions and concerns. Whether it is about a new medication I am prescribed, questions about an appropriate lupus diet to decrease my risk of heart disease, how I need to evaluate and approach a different symptom, or keeping up with my mental health and wellbeing while coping, I have a resource to go to. I am able to go to the topics index pictured below and choose from forty topics pertaining to lupus. The NRCL also gives me options for my advocacy and ambassador position, giving me scientific research done on lupus for diagnostics and causes, healthy lifestyle factors, symptoms and related conditions, impacts of lupus, treatments and research participation. This research tab is a powerful tool to display the efforts of the LFA, and all of the exciting research being done to improve the lives of those living with lupus and potentially finding a cure.

On the home page, you are also able to choose your "category," whether you think you have lupus, were newly diagnosed, you have been living with it for some time, you are a child, teen or young adult, a caregiver or a healthcare provider. These categories are excellent guiding tools that mold to a specific population within the lupus community, to help their needs the most effectively.

In all, the NRCL has over 600 medically-reviewed publications on a wide range of topics, so patients and caregivers know that they are obtaining legitimate advice for their illness. According to the LFA CEO, Sandra Raymond, it 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." This is why I have been enlivened regarding my patient advocate and ambassador position within the foundation. The LFA is so proactive in researching and overcoming every aspect of lupus from biology to lifestyle, and truly wants to be a driving force in helping their patients succeed in their lives despite lupus. The National Resource Center on Lupus is a direct result of promoting awareness, because of the federal funding, research funding and personal fundraising accomplishments by everyone involved. This is an illustration of where our fundraising efforts go to, which is extremely exciting!

Please share this post and spread awareness of our new tool that can change the lives and perspective of millions of people! Also, feel free to click around on the links within the article and explore the site. Although difficult to accept, it is an encouraging time to be diagnosed with lupus because of all the good that is being done for us in the community. Help us accomplish our goals to "Know Lupus, for a future with No Lupus."