NKF's Patient-Focused Drug Development (PFDD) Meeting for C3G

Thank you for visiting the National Kidney Foundation's website for the Patient-Focused Drug Development (PFDD) Meeting for C3G.
 
Webinar of NKF's Externally-led PFDD Meeting on C3G
August 4, 2017, Silver Spring, MD
 
From here you can learn about:
Please take the Patient Survey - this is the most important thing you can do on this website. By doing so, you will be contributing to an important step in treating C3G. Also, it will help us plan this important PFDD meeting.

About Us

The National Kidney Foundation is the oldest non-profit health organization dedicated to preventing kidney diseases.
 
Education of patients and healthcare providers is a big part of our work, and we support kidney patients by providing all sorts of educational materials and programs.

About PFDD Meetings

Patient-Focused Drug Development (PFDD) meetings bring together patients and their caregivers, doctors who are experts in the particular disease, representatives from the Food and Drug Administration (FDA), and pharmaceutical companies interested in developing medicines for the disease- all to hear from patients about the disease in question. In these meetings, the patient's experience is brought to the forefront for the FDA and pharmaceutical companies to understand.
 
PFDD meetings:
  • Benefit patients, the FDA, and help pharmaceutical companies develop potential new medicines  
  • Aid the FDA in advising a company while it is developing a potential medicine
  • Aid the FDA in its role to approve new medicines
  • Help raise awareness within the patient community, and elevate the knowledge base in the public on certain diseases
By doing all of the above, PFDD meetings help the FDA to bring new medicines to patients.
 
PFDD meetings can support making medicines available to patients by helping to identify:
  • Certain disease symptoms or side effects that are/not tolerable by the patient
  • Areas of unmet need in the patient population
  • Criteria for drug-discovery scientists to choose chemicals with the greatest potential to become medicines
  • Tools that measure the benefit of potential medicines.
More information on PFDD meetings can be found at:

About the C3G PFDD Meeting

The purpose of a PFDD meeting is to assist the Federal Drug Administration (FDA) in its role to approve potential medicines.
 
The National Kidney Foundation, along with the FDA, is conducting a PFDD meeting for C3G to learn the patient perspective on living with C3G. Understanding the patient perspective will help the FDA when it decides whether to approve a potential medicine for C3G.
 
The upcoming PFDD meeting for C3G will bring together patients, caregivers, doctors who are experts in C3G, and representatives from the FDA and pharmaceutical companies, to hear from patients, what it's like to live with C3G.
 
The meeting will be on Aug. 4, 2017 from ~8:30 AM – 1:10 PM at the Tommy Douglas Conference Center in Silver Spring, MD.
 
If you cannot attend the PFDD meeting in person, you can join the meeting by webinar.
 
The agenda consists mainly of two patient panels and discussion sessions on living with C3G.
 
The meeting will be led by two nephrologists who specialize in C3G:
 
Dr. Carla Nester
Dr. Carla Nester
University of Iowa, Carver College of Medicine, Iowa City, IA
Dr. Andrew Bomback
Dr. Andrew Bomback
New York-Presbyterian University Hospital of Columbia and Cornell, New York, NY
 
The output of the meeting will be a meeting report entitled "Voice of the Patient", which will be sent to the FDA, who will use it as a reference for future decisions on potential medicines for C3G.
 
Before you can register for the meeting, you must complete the patient survey.

About the Patient Survey

To prepare for the upcoming C3G PFDD meeting, the National Kidney Foundation needs your input on how living with C3G has affected your life.
 
This topic will be discussed in depth at the meeting, but your responses beforehand will help us to plan a very successful meeting.
 
The survey should take only about 10-15 minutes.
 
All information that you provide will be kept strictly confidential and will not leave the National Kidney Foundation.
 
Please complete the survey by May 26, 2017.
 

FAQs

  1. If I take the survey, what will you do with the information I give you?
    • The information you provide will be used ONLY for planning the meeting
    • No information you provide will leave the National Kidney Foundation, nor will it be posted on any National Kidney Foundation sites, or published in any form.
  2. How do I register for the PFDD meeting?
    • Soon after you have completed the survey, registration material will be sent to you.
  3. What if I want to participate in the meeting but can't attend in person?
    • The meeting will be broadcast by webinar. You can register to join the webinar after taking the survey.
  4. Can patients who are kids come to the PFDD meeting on C3G
    • YES! We need patients of all ages.
  5. Where, when, and for how long is the PFDD meeting on C3G?
    • The meeting is on Aug. 4, 2017 from about 8:30 AM to 1:10 PM at the Tommy Douglas Conference Center in Silver Spring, MD.
  6. Can I bring my caregiver (parent, guardian) to the PFDD meeting on C3G?
    • YES
  7. If I come to the PFDD meeting on C3G, do I have to do anything?
    • Some patients will be asked to serve on a panel to discuss what it's like to live with C3G and to take the treatments.
    • If you are asked to be a panelist, you will be coached on this aspect.
    • If you are not on the panel, your participation from the audience in the general discussion will be highly encouraged.
  8. What do patients from other PFDD meetings say about what it's like to be at this sort of meeting?
    • Here are samples of patients' comments from previous PFDD meetings:
      • "[We] felt a validation and a peace that is often missing from our daily struggles."
      • "By … listening fully as demonstrated in the Voices report, FDA sent our community a powerful message: we hear you, we know you are seriously ill, and we want to help."
      • "[W]e have opened up to you in ways that many of us do not open up to our hematologists, and…in ways that many of our families have never seen us before."

Contact Us

If you have any questions, please send us an email.