The Lupus Foundation can be the service arm of your practice for patients with lupus. Instead of patients wondering around the internet looking for information, Cindy Messerle, Chief Executive Officer of the Lupus Foundation of America, Philadelphia Tri-State Chapter, wants you to send patients to her and her staff.
The Philadelphia Tri-State Chapter covers New Jersey, Pennsylvania, and Delaware. NJAFP is working with the chapter to identify key tools for you and your patients. Scroll down for a comprehensive list of resources.
Cindy’s picks for you and your patients:
- The 5-part Lupus fact sheet series is a great resource for newly diagnosed patients and also available in Spanish. Download here or follow the link for more in-depth information.
- The Take Charge series is an email series geared to improve self-management skills. It auto-starts when a patient subscribes. Patients receive a weekly email for 12 weeks. It’s a gentle teaching method for patients who are typically already overwhelmed. This service is managed by the national LFA.
- The SLE Self Help (SLESH) Course is a 5-week course offered by the local chapter for about 15 patients. Patients should contact the chapter to get enrolled in the next course.
- Many patients with lupus struggle to keep working, creating financial hardships. The Guggenheim Grant-In-Aid Fund from the local chapter can provide limited financial assistance.
Patient Self-Management Resources:
- Take Charge Email Series is a 12-week email series to introduce patients to knowledge and skills to better manage lupus and its everyday challenges.
- The SLE Self Help (SLESH) Course is a free 5-week course proven to assist those living with lupus to take a more active role in their health. Topics covered include medications, exercise, grief, coping with pain and fatigue and much more. Facilitators live with lupus and show patients they are NOT alone.
- National Resource Center on Lupus (NRCL) is a dynamic collection of up-to-date resources and information on lupus.
- Research Accelerated by You (RAY) is a lupus data platform where people with lupus and caregivers share information to help researchers accelerate the development of new treatments and improve disease outcomes.
Patient Education Programs:
- Support Groups are led virtually by trained volunteers living with lupus. Contact LFA at firstname.lastname@example.org for more information. In addition to virtual support groups, there is a monthly lupus telechat. Register at email@example.com.
- Living Well with Lupus/Lupus and You are seminars held several times a year that bring together people living with lupus, their families, health professionals and a panel of experts. Click the link to register for the next event.
- Let’s Talk About It are live monthly webinars to help patients better managing symptoms. Click the link to register or to access archived webinars.
- Expert Series is an educational podcast series featuring leading lupus experts.
- Resources for Patients features the 5 part series listed above with links to a lot more information under each fact sheet, plus links to toolkits for parents and caregivers.
- Research News features current information about ongoing research.
- Lupus Science & Medicine is a peer-reviewed, open access, online journal.
- Professional Education - The LFA creates professional education opportunities in support of its mission to be a valuable resource for health care professionals and deliver state-of-the-science programs.