Webinar for the X-Linked Retinitis Pigmentosa (XLRP) Community
The Foundation Fighting Blindness recently held a webinar to provide details about an upcoming Externally-Led Patient Focused Drug Development (EL-PFDD) meeting for XLRP, and to provide background information about the Food and Drug Administration’s (FDA) drug review process.
The EL-PFDD meeting was held on June 7th, 2022. The goal of the June 7th meeting was to educate FDA staff and other key stakeholders such as biotech and pharmaceutical companies about what it is like to live with XLRP, with perspectives from both affected individuals as well as caregivers and family members of affected individuals. The FDA staff may use this information when reviewing new clinical trials or new drug applications for XLRP.
EL-PFDD meetings are unique among public meetings with the FDA and other stakeholders, with a format designed to engage patients and elicit their perspectives on two topic areas:
The most significant symptoms of their condition and the impact of the condition on daily life; and
The urgent mission of the Foundation Fighting Blindness is to drive the research that will provide preventions, treatments and cures for people affected by retinitis pigmentosa, macular degeneration, Usher syndrome and the entire spectrum of retinal degenerative diseases. The Foundation is a beacon for those affected by these blinding diseases. Join the fight and help us accelerate our mission.