September 25, 2017
College Park Marriott / Hyattsville, MD

Tell Your Lupus Story

The survey is now closed.  Thanks to everyone who took the time to fill it out and helped advance the Lupus Patient-Focused Drug Development Initiative.

The survey was designed to give people with lupus a channce to add their voices and tell the organizers and the FDA about their experience being diagnosed with lupus, living with the disease and pursuing treatment options. The survey data will help us plan the Lupus PFDD Meeting and develop a report on the lupus patient experience that will be shared with the FDA.

We will also be using the survey responses to select people with lupus to participate on patient panels and during facilitated discussions during the September 25, 2017 Lupus PFDD Meeting in Hyattsville, MD. Those who are interested in having one of these roles and who filled out the survey by July 1, 2017 will be notified in early August if they were selected.

Please note that survey is intended to collect information from people with lupus.  Parents of a child with lupus may also answer the survey questions on their child’s behalf.  Healthcare providers, researchers, or other stakeholders should not complete this survey.