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Rare Kidneys on the Hill Day
Washington, DC
See you at NephCure Hill Day 2027!
Rare Kidneys on the Hill Day is an opportunity for advocates to raise awareness about rare kidney disease (RKD) and to make their voices heard by their members of Congress on issues that impact their lives. Anyone impacted by RKD is invited to join us – patients, caregivers, physicians, and researchers are welcome!
NephCure takes care of scheduling your meetings with your members of Congress and will help prepare you for these meetings in advance. All you have to do is bring your personal story.
Thank You for Participating in NephCure’s Rare Kidneys on the Hill Day 2026
Advocates actively participated this year
Congressional offices engaged in our advocacy efforts
New NephCure cosponsors for the New Era Act
States actively participated on the Hill this year
Know Before You Go Webinar
View our Know Before You Go webinar to help you prepare for Rare Kidneys on the Hill Day. This webinar provides valuable insights into our goals for the event and equip you with the tools to effectively advocate for yourself and rare kidney patients. Please click on the link below to watch the webinar.
Witness the Impact, Join Rare Kidneys on the Hill Day
Step into the heart of advocacy. This video provides a glimpse into the power of collective voices and the meaningful impact created by those who advocated. Advocates united to raise awareness about rare kidney disease, share compelling stories, and make their voices resonate on Capitol Hill.
Be part of a movement that transforms stories into advocacy, leaving a lasting impact on the fight against rare kidney diseases.
From Patient to Advocate: My First Rare Kidneys on the Hill Day
Read Berkleigh Kennedy’s powerful firsthand story of attending her very first Rare Kidneys on the Hill Day as a high school student living with minimal change disease (MCD). From nervous first meetings to discovering the power of advocacy and community, her journey is a reminder that every voice can make a difference for rare kidney patients.
Read Now
Scholarships Available
NephCure is pleased to offer a limited number of scholarships to help advocates attend Rare Kidneys on the Hill Day. These scholarships cover the cost of airfare and hotel accommodations in Washington, D.C., for the individual named on the scholarship application. Scholarships will be awarded on a first-come, first-served basis, so we encourage you to apply as soon as possible. Please note that only one application per family will be accepted.
Apply now
Support H.R. 1518
Can’t join us on Capitol Hill? You can still make your voice heard from anywhere by calling your elected officials and urging them to support H.R. 1518.
Using our online advocacy tool, you can quickly find your representatives’ contact information and access a simple phone script to help guide your call.
Rare Kidneys on the Hill Day Past Events Photo’s
Sample Agenda
See below an example of Rare Kidneys on the Hill Day schedule.
Wednesday, July 24th
Arrival in Washington, D.C. and Hill Day Rally Dinner (Attendance at the Hill Day Rally Dinner is MANDATORY)
6:00 – 8:30 p.m. Rare Kidneys on the Hill Rally Dinner: Meet with advocates from your state or region, practice for your meetings, and fuel up with a kidney-friendly dinner.
Location: Hilton Washington, D.C. Capitol Hill
525 New Jersey Ave., NW, Washington, D.C., 20001
Thursday, July 25th
Meetings on Capitol Hill and Congressional Reception
8:30 a.m. Group photo on the U.S. Capitol steps (northeast corner)
9:00 a.m. – 12:00 p.m. Meetings with your members of Congress.
12:15 – 1:15 p.m. Lunch break. Food is available for purchase on the House side, Senate side, or in the Capitol Building.
1:30 – 5:00 p.m. Meetings with your members of Congress.
5:30 p.m. Congressional Reception (location TBD)
Frequently Asked Questions
Advocates are responsible for their own transportation. Uber, Lyft or taxis are available. Advocates have varied schedules based on their appointments. Most offices are walking distance from each other. The hotel where we have a room block (the Hilton Washington DC Capitol Hill) is located about a half mile from where meetings will begin on Capitol Hill.
Don’t worry! Each group will have a Team Leader who is well-versed in Rare Kidneys on the Hill Day and they will guide you each step of the way. You will be walking from one office to another for up to 8 meetings.
The dress code for Rare Kidneys on the Hill Day is business or business casual. The weather in July in DC can be very hot and humid, but indoors is air conditioned. We will also be doing a lot of walking so be sure to wear comfortable shoes!
Most likely you will be meeting with congressional staffers. These staffers are important because the actions that they recommend are usually adopted by the members of Congress for whom they work. It is also possible that you may meet directly with your congressional representative, but this will be based on his or her availability that day.
NephCure will be providing a low-sodium dinner at the Rally Dinner at 6:00 p.m. ET on Wednesday and low-sodium appetizers and beverages during the Congressional Reception at 5:30 p.m. on Thursday. All other meals will be your responsibility.
Hill Day is an opportunity for you to build relationships with your Members of Congress. They work for you and want to know about the issues that matter to you. This Hill Day, we hope to gain support for H.R. 6790 the New Era of Preventing End-Stage Kidney Disease Act (the New Era Act). The New Era Act has the potential to bring about significant positive changes in how we understand, treat, and study RKD. This legislation aims to help people with RKD by finding and treating diseases earlier, enhancing education of doctors and patients, and conducting more research. This could lessen the impact of RKD on people’s lives and reduce costs for patients and the health care system in the long run. We may also ask for congressional support on other bills.
Advocacy is most effective when you build and maintain relationships over time. That is why it is important that you stay in contact with your members throughout the year. To help you stay in touch, join NephCure’s Action Network, or NCAN, if you haven’t already. That way, you will receive real-time action alerts, advocacy campaign updates, and educational information throughout the year.
Sponsors
Thank you to our generous sponsors for supporting Rare Kidneys on the Hill Day 2024!
Volunteer
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.
Advocate
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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