Externally-Led Patient-Focused Drug Development (EL-PFDD) Meeting on Lupus Nephritis
Patient-Focused Drug Development Meeting on Lupus Nephritis
An exciting opportunity hosted by the National Kidney Foundation for people living with lupus nephritis to share with the U.S. Food and Drug Administration (FDA) and pharmaceutical companies what it’s like to live with this disease.
This will be an in-person meeting but online attendance will be possible. The meeting is called an Externally-Led Patient-Focused Drug Development meeting.
Register Online
Anyone who lives with or is interested in lupus nephritis is encouraged to attend. This includes people with lupus nephritis of all ages, care partners, families, and friends, as well as physicians, researchers, and other interested individuals.
Each person (e.g., child, spouse, etc.) must register separately.
Watch this page for updates during week of October 7, 2024:
- You'll be able to submit comments on your experience with lupus nephritis before the meeting
- The link to join the meeting will be available on the day of the meeting (October 11, 2024)
Take the patient survey
We need your input on how lupus nephritis has affected your life. We need your input even if you can’t attend the meeting.
Your response will help us plan a meeting that will most clearly inform the FDA and Pharma on what it’s like to live with lupus nephritis.
Information you provide in the survey will NOT be shared with anyone or any organization.
Why is this meeting important to me?
This EL-PFDD meeting is a unique opportunity for you and your care partners to share experiences with the FDA and the Pharma industry concerning what your daily life is like with lupus nephritis.
- What are the daily challenges that your symptoms cause?
- What do you need in new medicines to make a meaningful difference in your life?
- In what type of clinical trial might you be willing to participate?
- Many other things the FDA and pharma want to hear so they understand what matters to individuals with lupus nephritis regarding new treatments for the disease.
Your input will help the FDA to judge whether new drugs seeking approval meet the needs of people living with lupus nephritis.
Pharmaceutical companies can use your input when they develop new treatments and design clinical trials for lupus nephritis.
Event Details
October 11, 2024 | 10:00am – 3:30pm Eastern Time
This will be an in-person meeting. If you prefer to join remotely, the link to the meeting will be posted on this page on the day of the meeting (October 11, 2024).
Questions?
Voice of the Patient Report
After this meeting, a report titled “Voice of the Patient” will summarize what was heard during the meeting and will serve as a key reference for future Lupus Nephritis drug development efforts. This report can support FDA staff by informing the therapeutic context and can serve as a reference when advising drug sponsors on their development programs. The report will be available for the public to read.
Find Out More
Soon after you register, you will receive an invitation to an Informational Webinar on the EL-PFDD Meeting. This webinar will provide the background so you can participate fully in the meeting.
More Important Information
The National Kidney Foundation is proud to partner in the planning of this EL-PFDD meeting with the following organizations
National Kidney Foundation
The National Kidney Foundation (NKF) is the oldest and largest non-profit health organization dedicated to preventing kidney diseases and improving the health and well-being of individuals and families affected by kidney disease. Education of patients and healthcare providers is a big part of the NKF’s work, and we support kidney patients by providing all sorts of educational materials, programs, and patient services.