Rare Kidney Disease Week 2022


About the Event

This year marks a major milestone in NephCure’s history — we’re excited to announce that this summer, we’ll be holding the very first Rare Kidney Disease Week! This year, RKDW will be completely virtual and feature a variety of interesting advocacy events, including:

Training for the New Era (Monday, 7/18): In this advocacy training, Rare Kidneys on the Hill participants will meet their groups, receive advocacy training, and review the tasks and goals related to their Hill visits.

Rare Kidneys on the Hill (Tuesday, 7/19): Rare Kidneys on the Hill will be our traditional Capitol Hill Day, but virtual this year. This event is an opportunity for you to meet with your federally elected officials, share your stories, and let them know how they can play a major role in advancing rare kidney disease policy, including the New Era for Preventing End-Stage Kidney Disease Act.

Rare Kidney Fighter Awards (Announced on Wednesday, 7/20): NephCure will honor one U.S. Senator and one U.S. Representative from each major party who has fought to advance NephCure’s policy priorities over the previous year.

A New Era for Rare Kidney Disease Care: A Congressional Briefing (Thursday, 7/21): NephCure will host an annual Congressional briefing for members of Congress and their staff. This year’s briefing will review the recently introduced New Era for Preventing End-Stage Kidney Disease Act (H.R. 7506) and other developments in the world of rare kidney disease policy.

Rare Kidney Disease Week will serve as an opportunity for NephCure Advocates to share their stories with members of Congress and voice their support for the New Era of Preventing End-Stage Kidney Disease Act, while demonstrating they are the go-to resource and voice for rare kidney disease advocacy.

Register now to receive all RKDW22 updates and learn how you can make your voice heard! PLEASE NOTE: As of 6/15/22, all spots available for the New Era Training and Rare Kidneys on the Hill Day have been filled. However, you can still register to attend the Congressional Briefing on Thursday, July 21!

julio 18, 2022

- julio 22, 2022

12:00 am

-11:55 pm

Advocacy, Patient Program

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