Externally Led Patient-Focused Drug Development Meeting on APOL1 Kidney Disease

(also called APOL1-mediated kidney disease)

Two doctors in white coats collaborate over a laptop, one with a stethoscope, in a bright office setting.

The National Kidney Foundation and NephCure will host a meeting to bring to the US Food and Drug Administration (FDA) and other stakeholders, including healthcare providers, academia, industry, etc., the voice of people living with kidney disease that is related to APOL1. This is called APOL1 kidney disease (AKD), also called APOL1-mediated kidney disease.

The meeting is called an Externally Led Patient-Focused Drug Development (EL-PFDD) Meeting.

This is an important meeting for the AKD community: it will inform the FDA and other stakeholders about patients’ experiences living with AKD and what they need in new medicines.

Register Online (Free!)

Each person (patient, child, spouse, parent etc.) must register separately.

In-person attendance is highly recommended because it provides the chance to network with other patients, meet the major stakeholders, and interact maximally (in person) during the audience discussion.

Can’t afford in person attendance? A limited travel scholarship fund is available for those needing financial support for travel to and/or lodging at this meeting.

Virtual attendance will also be offered.

Register

Event Details

Where: College Park Marriott Hotel and Conference Center, Hyattsville, MD

  • In-person attendance is highly encouraged. Alternatively, you can join the livestreamed meeting
  • Can’t afford to attend in person? Contact Juan Perez.

When: November 6, 2026, 10:00 AM to 3:30 PM Eastern Time
Meals: At the hotel. Buffet Welcome Dinner, November 5, 6:00 PM; breakfast and lunch at meeting
Lodging: Rooms will be available at the conference hotel - Group rate: $189.00 per night + taxes
Who will attend: Representatives from FDA, pharma companies developing drugs for AKD, and other stakeholders
Who can attend: Anyone who lives with or is interested in AKD. This includes people with AKD of all ages, all stages of disease, spouses care partners, families, and friends.

Why should I attend?

This is the opportunity for you and your care partners to speak directly to the FDA and other stakeholders and tell them what it’s like to live with AKD every day and what you need from new medicines. For instance:

  1. What are the most important daily challenges that your symptoms cause?
  2. In what type of clinical trial might you be willing to participate?
  3. What do you need in new medicines to make a meaningful difference in your life?

Many other topics the FDA and other stakeholders want to hear so they understand what matters to people living with AKD.

Take the patient survey

  • Help us plan a meeting that will most clearly inform the FDA and other stakeholders on what it’s like to live with AKD.
  • Tell us how AKD has affected your life.
  • Spouses, parents, and care partners can take survey
  • We need your input even if you can’t attend the meeting.

Information you provide in the survey will NOT be shared with anyone or any organization.

Take the survey

What are EL-PFDD meetings?

EL-PFDD meetings bring the voice of patients to the FDA and other stakeholders. Patients talk in person, directly to these two groups about their symptoms, daily challenges, and experiences with treatments for their disease.

Because the FDA wants to hear from only patients and their spouses, parents, and care partners, everyone else in the audience will be in "listening mode."

Your input can help 1) the FDA make decisions on approving potential medicines for AKD and 2) pharmaceutical companies to design medicines and clinical trials that are meaningful for patients.

The EL-PFDD meeting on AKD

The meeting agenda consists of two brief presentations on AKD by experts in the disease, a short presentation by the FDA, and two patient panels. Most of the meeting will focus on hearing patients’ perspectives on three broad topics:

  1. Living with AKD: Disease Symptoms and Daily Impacts
  2. Clinical Trials for AKD
  3. Current Challenges to Treating AKD

The meeting will be co-chaired by two leading physicians who are experts in AKD

Dr. Keisha Gibson

Dr. Keisha Gibson

Professor of Pediatrics and Medicine
Senior Vice Chair of Clinical Affairs, Department of Pediatrics
Division Chief of Pediatric Nephrology University of North Carolina

kirk_campbell

Dr. Kirk Campbell

Professor of Medicine
Chief, Renal Division
University of Pennsylvania Perelman School of Medicine
Current president, National Kidney Foundation

Why is this meeting important to me?

Your input will help the FDA to judge whether new drugs seeking FDA approval meet the needs of people living with AKD.

Pharmaceutical companies can use your input when they develop new treatments and design clinical trials for AKD.

Hear from Previous Participants

FDA Participant

I can say with certainty…that the stories that you shared with us today, your experiences with the disease will certainly impact how we at FDA will think about this disease, will approach our discussions with sponsors moving forward, and will really shape the development in the future of therapies for this disease.

Patient Participant

Being able to tell my story, be heard, and people empathizing and understanding the struggles this disease faces you with is indescribable.

FDA Participant

I think that your stories really highlight the urgency with which we need to find effective treatments for this disease, and also treatments that have better safety profiles than those that are currently out there.

Patient Participant

I liked that everyone was invited to speak freely and participate. It was an excellent opportunity to tell our stories.

More Important Information

If I take the Patient Survey, what will you do with the information I provide?

The information you provide will remain strictly confidential: it will not be shared with anyone or any organization.
 
The information you provide will remain confidential: it will NOT BE SHARED with anyone or any organization outside of the NKF in a way you can be identified.
 
Your responses will be used to plan the meeting. They may also be included in the Voice of the Patient Report after the meeting or in other educational materials. However, your name and other identifying information WILL ALWAYS BE REMOVED.

Is there a charge to attend the meeting?

No, this meeting is free and open to the public. If you need to stay overnight, you will be responsible for your lodging.

What if I want to attend in person but can’t afford the trip?

We will have a limited number of travel scholarships available on a first – come, first – served basis.

What about meals during the meeting?

There will be a Welcome Reception Dinner the night before the meeting
 
Breakfast and lunch will be provided on the meeting day

How do I register to attend the EL-PFDD meeting?

Click here to register for the meeting. The link to join remotely will be sent before the meeting.
 
EACH PERSON (e.g., CHILD, SPOUSE, ETC.) MUST REGISTER SEPARATELY.

Can my care partner/parent/friend attend the meeting?

YES! Anyone caring for a person with APOL1 Kidney Disease or interested in the disease is welcome to attend.

When and for how long is the EL-PFDD Meeting on APOL1 Kidney Disease?

The meeting will be on November 6, 2026, 10:00 AM to 3:30 PM Eastern Time.

Is this EL-PFDD Meeting on APOL1 Kidney Disease for pediatric patients?

YES! We want people of all ages living with APOL1 Kidney Disease to attend.

What happens after the meeting?

NKF will write the Voice of the Patient Report. This will be sent to the FDA and can be used to help in their decisions to approve potential new treatments for APOL1 Kidney Disease.

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.

NephCure

NephCure’s mission is to ensure that all individuals with rare, protein-spilling kidney disease have equitable access to the care and treatments that offer them the best kidney health outcome possible. Founded in 2000 by a group of committed patient parents, NephCure has invested more than $40 million in kidney disease research and helped create a landscape where there are now new treatments and more than 60 interventional drug trials for rare kidney diseases. NephCure is a U.S. tax exempt 501(c)(3) public charity.