Rare Kidney Disease Action Network
AKF's Rare Kidney Disease Action Network helps ensure that the voices of people fighting rare kidney diseases are heard and amplified.
AKF's mission is to fight kidney disease and help people live healthier lives. By joining the Rare Kidney Disease Action Network, you are helping to advance our mission.
What is the Rare Kidney Disease Action Network?
The Rare Kidney Disease Action Network (RKDAN) is a group of people who have been impacted by rare kidney disease who effectively advocate on behalf of their fellow patients for important and effective legislation and policies at both the state and federal level. This network also works with the American Kidney Fund's educational team to help us amplify awareness about your rare disease and make sure that we are offering all the tools this patient community may need.
The RKDAN began its work in 2024 by organizing and advocating around IgA nephropathy. We are expanding focus of the RKDAN to all rare kidney diseases in 2025.
Through RKDAN you become connected to a new network of like-minded individuals who may share similar experiences. AKF provides training to members to help them advocate, learn how to tell their story in the most powerful way, communicate how kidney disease has impacted your life and offers a platform for you to lend your voice in supporting policy solutions that will improve the lives and health of others with rare kidney diseases. We also offer information about clinical trials — what it means to participate in a trial, why it is important to make sure patients are represented in this process, and how to find available trials and other resources.
We invite you to join the American Kidney Fund in this new advocacy leadership opportunity. The Rare Kidney Disease Action Network will be the face of AKF on rare kidney disease issues for lawmakers, community members and fellow patients.
RKDAN trainings
View our list of trainings to help get you started with RKDAN.
View or download:
- Media Training: This training, recorded on Aug. 27, 2024, will help participants ensure a successful outcome when talking to journalists. Topics include how to prepare for a media interview and how to get your message across.
- Coming soon: “How to Tell Your Story” and “Rare Disease Spotlight: IgA Nephropathy”
Be heard
Join our Rare Kidney Disease Action Network (RKDAN)
By joining the RKDAN you will learn how to:
- Respond to AKF request to educate policymakers, media and the larger community via:
- Action Alerts to elected officials on important kidney legislation
- Providing testimony at legislative hearings
- Participating in forums and discussions on kidney disease
- Create a community – an open, safe and supportive space for others to learn about and discuss kidney issues.
Responsibilities of an RKDAN members:
- 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
- Complete and share AKF Action Alerts
Learn more about rare kidney diseases
Rare diseases are health conditions that affect a small number of people, defined in the United States as those impacting fewer than 200,000 individuals at any time. These diseases are unique because they're uncommon, come from various causes, and can show up in many ways in different people. This rarity makes diagnosing, treating, and studying these diseases quite challenging.
Your kidneys are vital organs that filter fluid and waste out of your blood, and you cannot live without them. Diseases that lower your kidney's ability to...
Clinical trials are key to advancing the treatment of chronic kidney disease, and other kidney diseases. Learn about how clinical trials work and see if you mat...
IgA nephropathy is a rare disease that causes kidney damage when your own immune system produces antibodies in your kidneys. This then triggers harmful inflamma...
Polycystic 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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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.
97 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.
