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Rare Kidneys on the Hill Day
Hilton Washington DC Capitol Hill: Washington, DC
July 23rd-24th, 2025
Registration is Open!
Share your Rare Kidneys on the Hill Day experience on social media, use #NephCureHillDay2025 and follow us @NephCure.
Uniting Voices for Change on Capitol Hill
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.
The event kicks off with a Rally Dinner on Wednesday, July 23rd where you will network with fellow advocates from around the country and work in teams to prepare for your meetings on Capitol Hill. Thursday, July 24th starts with a group photo on the steps of the Capitol Building. Then, it’s off to meet with your members of Congress. You will have up to eight meetings in various buildings around Capitol Hill. The day can be tiring, but you can relax and celebrate that evening at a reception where food and beverages will be served.
Attendance at the ‘Know Before You Go’ training webinar on July 8th or July 9th is mandatory. This webinar includes an overview of the event schedule and logistics, a civics refresh, a review of suggested policy asks, guidance on how to connect your story to policy asks, and tips on how to amplify your advocacy using social media.
Why should you participate in NephCure’s Rare Kidneys on the Hill Day?
As a constituent, voter, and, most importantly, a person impacted by rare kidney disease (RKD), your voice matters. Rare Kidneys on the Hill Day provides an opportunity for you to educate your members of Congress and put a face to RKD. By sharing your story, you can help advance policies critical to the RKD community, including research funding, improved diagnostics, and access to treatments and care.
Rare Kidneys on the Hill Day is also a great way to connect with other people impacted by RKD and to be empowered!
Mandatory Virtual Training Webinar
Join one of our two mandatory virtual training sessions to help you prepare for Hill Day! These sessions will provide valuable insights into our goals for the event and equip you with the tools to effectively advocate for yourself and rare kidney patients. Simply select the date and time that works best for you from the options below.
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.
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
Sample Agenda
See below an example of Rare Kidneys on the Hill Day schedule.
Wednesday, July 23rd
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 24th
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 NephCure’s Government Advocacy Program!
Presidential
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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.
Give
Make a lasting impact in the fight against rare kidney disease by donating to NephCure today or explore other ways to give. Whether it’s through a direct donation, launching a personal fundraiser, or requesting a matching gift from your employer, your contribution empowers critical research, supports patients and their families, and raises awareness about these life-altering conditions.
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