Advocacy in Action

Lupus:  Patient Voices Report Released!

On March 6, 2018, the Lupus Foundation of America announced the release of Lupus: Patient Voices, a comprehensive report based on input from the Externally-led Lupus Patient-Focused Drug Development (PFDD) Meeting and pre-meeting survey conducted last fall.  The survey was completed by over 2,100 people with lupus and generated important data about their disease symptoms and treatments.

On September 25, 2017, over 300 people with lupus attended the Lupus PFDD Meeting in Hyattsville, MD, with another 300 attended via live webcast.  This meeting was considered a historic patient-focused drug development meeting so that the FDA understands the patient perspective and how we are impacted by the disease.

The PFDD is a set of laws and policies providing opportunities for patients to be more involved with the FDA's drug review process.  According to the Lupus Foundation of America, this report is considered patient experience data, and can be used by the FDA during the review and approval process of new drugs for lupus.

The Lupus: Patient Voices Report and the Lupus PFDD meeting are the result of a collaboration between:

• Lupus Foundation of America
• Lupus and Allied Diseases Association
• Lupus Research Alliance

To learn more about the Lupus PFDD Initiative and read the report, please visit www.lupuspfdd.org.

 Our voices are important and really do matter!