Lupus patient advocates launching initiative to give give patients a voice
Lupus patient advocates are planning to hold the Lupus Patient-Focused Drug Development (PFDD) Meeting, titled Lupus: Patient Voices, on Sept. 25 in the Washington, D.C., area, a release on the Lupus Foundation of America website said.
The meeting will be the first of its kind, where individuals with lupus can influence the future development of lupus drugs by sharing how the disease affects their day-to-day lives and openly communicate their thoughts on the current and future treatments for lupus, the posting said
“The Lupus Patient-Focused Drug Development (PFDD) Meeting is an incredible opportunity for people with lupus to change the way new treatments are discovered, tested and approved and to bring those treatments to patients as fast as possible,” Lupus Foundation of America President and CEO Sandra Raymond said in the release.
Parents of children with lupus are also encouraged to attend the meeting. The initiative will help provide Food and Drug Administration (FDA) officials with information to consider while evaluating future lupus treatments, the release said.
Interested parties can participate by completing the online survey and sharing their unique stories. The survey will assist in the planning of the Sept. 25 meeting and will be compiled for a future FDA report.
“We are thrilled to be part of this remarkable and long overdue initiative and we strongly urge anyone living with this debilitating disease to act now by taking the survey to help advance new therapies in lupus,” Kathleen Arntsen, Lupus and Allied Diseases Association president and CEO, said in the release.
The Lupus PFDD meeting is being organized by the Lupus and Allied Disease Association, the Lupus Foundation of America, and the Lupus Research Alliance. Everyone with lupus and their families is encouraged to participate in this initiative.
To take the survey, go to www.lupuspfdd.org.
Organizations in this story
LUPUS Foundation of America 270 Farmington Avenue, Suite 218 West Hartford 06032