Lupus Patients Will Have a Chance to Sit Down with Treatment Developers and Regulators

American lupus patients will get an unusual chance in person or online to tell therapy developers and regulators what future treatments ought to do for them.

Three national organizations are sponsoring the Washington-area gathering on Sept. 25, which those unable to make the trip can participate in by watching a live webcast. The three are the Lupus Patient-Focused Drug Development meeting are the Lupus and Allied Diseases Association, the Lupus Foundation of America and the Lupus Research Alliance.

In addition to arranging the gathering, the sponsors are asking patients and their parents to take part in a survey aimed at helping others understand the challenges of the disease. The title of the survey is “Tell Your Lupus Story.”

Those who participate in the questionnaire, the Washington meeting, or both can give the Food and Drug Administration insight into what new lupus treatments ought to offer.

The initiative is a one-of-a-kind opportunity for lupus patients to contribute to drug development by explaining how the disease affects their lives.

“For far too long individuals with lupus have suffered greatly from the lack of adequate treatments,” Kathleen A. Arntsen, president of the Lupus and Allied Diseases Association, said in a press release provided to Lupus News Today.

The gathering in Washington on Sept. 25 give them “the extraordinary opportunity to sit at the table, share their unique viewpoints, and be heard by the FDA,” she said.

“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.” Arntsen added.

The information in the survey will help the three lupus organizations prepare a presentation for the meeting and a detailed report to submit to the FDA.

In addition to taking part in the survey, patients and their families can share their lupus story on social media such as Facebook and Twitter with the hashtag #lupuspfdd.

The gathering on Sept. 25 will be at the College Park Marriott Hotel and Conference Center in Hyattsville, Maryland.

Those attending can offer their thoughts during patient panel sessions and discussions, and during an open comment session.

“The lupus community has united to support this critical effort, and we encourage all people with lupus to participate and share their story so that we can continue to make a difference in the fight against this cruel disease,” said Sandra C. Raymond, president of the Lupus Foundation of America.

The FDA’s participation in the Hyattsville event indicates that it wants to hear “patient concerns and priorities in considering how best to evaluate potential new drugs and diagnostic tools,” said Margaret G. Dowd, the Lupus Research Alliance’s co-president.

For more information on the survey, please visit this link.