Rare Kidney Disease Action Network (RKDAN)
Helping ensure that the voices of people impacted by rare kidney diseases are heard and amplified.
What is the Rare Kidney Disease Action Network?
RKDAN is a national community of people with rare kidney disease, caregivers and other advocates united in their efforts to advance legislative and policy changes to improve the lives of those living with rare kidney disease. RKDAN members share their lived experiences to champion policies and laws at state and federal levels. These efforts help expand access to care, improve patient outcomes and strengthen support for the kidney community.
Beyond advocacy, RKDAN members may also contribute their perspective to help ensure AKF's educational resources and tools reflect the needs and experiences of patients and families.
Why join?
As a member of RKDAN, you'll have the opportunity to:
- Connect with a nationwide community of patients and advocates.
- Receive exclusive advocacy training from American Kidney Fund staff.
- Learn how to effectively share your story with lawmakers and your community.
- Participate in advocacy opportunities that support meaningful policy change at the state and federal levels, such as providing testimony at legislative hearings.
- Provide input and feedback on AKF educational resources by sharing your perspective and lived experience.
- Make your voice heard to strengthen and support the rare kidney disease community.
Hear stories from Rare Kidney Disease Action Network members
Living with a rare kidney disease can be challenging, but no one has to navigate the journey alone. Hear from RKDAN members Gene, Sharron, and Vaughn. They share their stories and explain why self-advocacy matters.
Share your story
This guide helps young people find the right words and moments to explain their condition to others.
This guide helps people living with a rare kidney disease talk about their experiences in ways that feel comfortable.
Watch - IgA nephropathy diagnosis experiences
AKF's RKDAN helps ensure that people with rare kidney diseases have a voice. Members also work with AKF to raise awareness and ensure we offer all the tools this patient community may need.
Hear from Rare Kidney Disease Action Network member Sherry B., as she shares her personal experience of being diagnosed with IgA Nephropathy.
Hear from Rare Kidney Disease Action Network member Jason G., as he shares his personal experience of being diagnosed with IgA Nephropathy.
Hear from Rare Kidney Disease Action Network member Ariana B., as she shares her personal experience of being diagnosed with IgA Nephropathy.
RKDAN trainings
View previously recorded training sessions to help drive awareness about rare kidney diseases.
Responsibilities of an RKDAN member:
- Complete and share AKF Action Alerts
- Be supportive of fellow advocates
- Be willing to learn how you can make a difference
- Share your kidney story
- Inform AKF of issues impacting you
Learn more about rare kidney diseases
Rare diseases are health conditions that affect a small number of people. In the United States, they affect fewer than 200,000 people at any time. These diseases are unique because they are rare, have different causes, and can affect people in many ways. This rarity makes diagnosing, treating, and studying these diseases quite challenging.
Los riñones son órganos vitales que depuran de la sangre el agua y los desechos. Es imposible vivir sin ellos. Las enfermedades que reducen la capacidad de los riñones para limpiar la sangre pueden afectar solo los riñones o dañar además otras partes del organismo. Estos problema...- ArtículoLos ensayos clínicos son esenciales para mejorar el tratamiento de la enfermedad renal crónica y otras enfermedades renales. Sepa cómo funcionan los ensayos clínicos y vea si cumple los requisitos.
Treatments and advanced technologies are changing what's possible for people with chronic kidney disease (CKD). Learn about FDA-approved innovations and promising research still in development. Stay informed, talk to your doctor, explore what's on the horizon, and do your own res...- ArtículoPolycystic kidney disease (PKD) is a genetic disease that causes many cysts to grow inside your kidneys. Learn about the causes, symptoms, and treatment for PKD.
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96 cents of every donated dollar goes to patients and programs.
Every success, milestone and breakthrough we achieve for patients and their families depends on caring and generous people like you. Your gift goes further when you give to AKF.
96 cents of every donated dollar goes to patients and programs.
Thank you to our sponsors
The Rare Kidney Disease Action Network is made possible with support from Novartis Pharmaceuticals Corporation, Otsuka America Pharmaceutical, Inc. and Travere Therapeutics.
