Patients living with APOL1 kidney disease will have a rare opportunity to speak directly to the FDA and pharmaceutical companies about their daily struggles and what they need from new medicines. The National Kidney Foundation and NephCure are hosting an Externally-Led Patient-Focused Drug Development (EL-PFDD) meeting on November 6, 2026, in Hyattsville, Maryland, where the voices of people with this rare genetic kidney condition will help shape the future of treatment development.

APOL1 kidney disease, also called APOL1-mediated kidney disease, is a genetic form of kidney disease that disproportionately affects Black Americans and people of African descent. Unlike many other kidney conditions, APOL1 disease is driven by specific genetic variants that increase the risk of kidney damage. This EL-PFDD meeting represents a critical moment for the APOL1 community to ensure that new drugs being developed actually address what matters most to patients living with the condition.

What Exactly Is an EL-PFDD Meeting and Why Does It Matter?

An EL-PFDD meeting is a formal FDA-recognized process that brings patients and their caregivers together to share their real-world experiences with a disease. The FDA uses this input to make decisions about whether new medicines meet the actual needs of patients, and pharmaceutical companies use patient feedback to design drugs and clinical trials that are truly meaningful. In other words, patients get to tell the FDA and drug makers what living with APOL1 disease is really like, and those stories directly influence how treatments are developed.

The November meeting will feature two expert physicians who specialize in APOL1 disease, a presentation from the FDA, and two patient panels. However, the bulk of the meeting will focus on hearing directly from patients about three major topics:

• Living with APOL1 Disease: What are the most important daily challenges caused by symptoms, and how does the disease affect your quality of life?
• Clinical Trials: What type of clinical trial would you be willing to participate in, and what would make a trial meaningful to you?
• Treatment Challenges: What barriers do you face in getting treatment, and what do you need from new medicines to make a real difference in your life?

One patient who participated in a previous EL-PFDD meeting captured the power of this process, stating: "Being able to tell my story, be heard, and people empathizing and understanding the struggles this disease faces you with is indescribable".

Who Can Attend and How Do You Get Involved?

The meeting is open to anyone affected by APOL1 kidney disease, including patients of all ages and all stages of disease, spouses, parents, caregivers, and friends. Registration is free, and both in-person and virtual attendance options are available. The meeting runs from 10:00 AM to 3:30 PM Eastern Time on November 6, 2026, at the College Park Marriott Hotel and Conference Center in Hyattsville, Maryland.

For those who cannot afford to travel, the National Kidney Foundation and NephCure are offering a limited travel scholarship fund on a first-come, first-served basis to help cover transportation and lodging costs. The conference hotel is offering group rates of $189 per night plus taxes, and meals including a welcome dinner on November 5 and breakfast and lunch on the day of the meeting are provided.

If you cannot attend in person but still want to contribute, you can complete a patient survey that will be shared with the FDA and other stakeholders. Your input will help inform drug development decisions even if you cannot be present at the meeting.

How to Make Your Voice Heard in APOL1 Drug Development

• Register for the Meeting: Visit the National Kidney Foundation website to register for free, either for in-person or virtual attendance. Each person, including patients, spouses, parents, and caregivers, must register separately.
• Request Travel Support: If cost is a barrier, contact Juan Perez to inquire about travel scholarships that can help cover transportation and lodging expenses for the November meeting.
• Complete the Patient Survey: If you cannot attend the meeting, fill out the patient survey to share your experiences and needs. Your responses will be kept confidential and will not be shared with any organization outside the FDA and stakeholders.
• Prepare Your Story: Think about the daily challenges your symptoms cause, what treatments you have tried, and what you would need from new medicines to improve your quality of life. These personal stories are what the FDA wants to hear.
• Bring a Care Partner: If you attend, consider bringing a spouse, parent, or caregiver who can also share their perspective on what it is like to support someone with APOL1 disease.

Why Patient Input Is Critical for APOL1 Treatment Development

The FDA and pharmaceutical companies developing new drugs for APOL1 disease want to understand what truly matters to patients. This is not just about reducing kidney protein loss or slowing kidney decline on a lab test. It is about understanding how the disease affects daily life, what side effects patients can tolerate, and what outcomes would make a meaningful difference in their lives.

"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," an FDA representative stated.

FDA Representative, U.S. Food and Drug Administration

Another expert emphasized the urgency of this work, noting: "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".

The National Kidney Foundation is the oldest and largest nonprofit organization dedicated to preventing kidney disease and improving the health of individuals and families affected by kidney disease. NephCure, founded in 2000 by patient parents, has invested more than $40 million in kidney disease research and helped create a landscape where there are now more than 60 interventional drug trials for rare kidney diseases.

If you or someone you know is living with APOL1 kidney disease, this November meeting represents a unique opportunity to ensure that your voice shapes the future of treatment options. Whether you attend in person, join virtually, or complete the patient survey, your input can directly influence how the FDA evaluates new medicines and how pharmaceutical companies design treatments that truly meet the needs of the APOL1 community.