Patient Summit


Come and be part of an enriching and empowering occasion at the annual NephCure Patient Summit and Youth Summit. This gathering is tailored for individuals, families, caregivers, advocates, and healthcare allies touched by rare, protein-spilling kidney diseases.

Our aim is to offer education, solidarity, and optimism to those navigating the challenges of rare kidney disease (RKD). Join us in forging connections, acquiring knowledge, and being inspired. Together, let’s create lasting memories and foster hope in this historical setting.

At this event you will hear from leading experts, researchers, and individuals who have dedicated their careers or are personally affected by RKD, learn from NephCure specialists who are at the forefront of RKD innovation and working to improve the lives of RKD patients, gain valuable insights into managing the challenges of living with RKD such as diet and nutrition, mental health, and more. You will also connect with others who understand your journey and build a support system, learn how to be a strong advocate for yourself and the RKD community, the youth summit offers a safe space for young kidney warriors and their siblings to connect, learn, and have fun.

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Patient Summit 2024 Recap

Thank you to everyone who joined us at the 2024 Patient Summit!

We are proud to announce we had 255 attendees at this year’s Patient Summit, with 139 of these individuals attending for the very first time!

We are grateful beyond words for everyone who joined us at the 2024 NephCure Patient Summit! Your presence, stories, and support made this event truly special. Together, we’re stronger in the fight against kidney disease. Thank you for being a part of our community!

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Discover the power of volunteering with NephCure through our Volunteer Hub, your ultimate destination for all things volunteering. Whether your passion lies in fundraising, advocacy, patient support, event planning, or outreach, there’s a meaningful role waiting for you. Check out our volunteer opportunities and be a part of making a difference.


NephCure is committed to advocating for policies that improve the lives of rare kidney disease patients and their families. Learn more about our advocacy efforts and policy priorities, including our support for the New Era Bill and other legislative initiatives aimed at advancing research and access to care. Join the NephCure Action Network and be a voice for change.

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