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Philadelphia, PA — May 1, 2025 — NephCure, a leading nonprofit organization dedicated to finding better treatments and a cure for rare, protein-spilling kidney diseases, is proud to announce the launch of its inaugural Advocacy Academy, a four-week program designed to build and strengthen the advocacy skills of rare kidney disease (RKD) patients, families, and allies.
Beginning today, Advocacy Academy participants will embark on a focused journey to become more effective champions for the RKD community. The course will offer targeted training on critical advocacy skills, including legislative engagement, storytelling for impact, and grassroots mobilization.
Graduates of the Advocacy Academy will be fully prepared to participate in Riñones raros en el día de la colina on July 23-24, 2025, where they will meet directly with elected officials to advocate for vital policies such as the New Era of Preventing End-Stage Kidney Disease Act (H.R. 1518) and other initiatives supporting RKD patients. Participants will also be empowered to lead advocacy efforts in their own state and local communities year-round.
“Our goal is to equip our advocates with the tools they need to create real change,” said Matthew Johnson, NephCure Director of Government Relations and Advocacy. “By investing in their development, we are strengthening the voice of the RKD community and ensuring policymakers hear directly from those most impacted.”
Throughout the course, participants will engage in interactive sessions, complete quick educational modules via NephCure’s Advocacy Accelerator platform, and work toward a final advocacy project to cap off their training.
NephCure’s Advocacy Academy efforts would not be possible without the generous support of its sponsors, Travere Therapeutics, Novartis, and Otsuka.
For more information about NephCure’s Advocacy Academy or to get involved in rare kidney disease advocacy, please haga clic aquí or contact advocacy@nephcure.org.
Acerca de NephCure
La misión de NephCure es capacitar a las personas con una enfermedad renal rara que derrama proteínas para que se hagan cargo de su salud y, al mismo tiempo, lideran la revolución en investigación, nuevos tratamientos y atención. Fundada en 2000 por un grupo de padres pacientes comprometidos, NephCure ha invertido más de $40 millones en la investigación de enfermedades renales y ha ayudado a crear un panorama en el que ahora existen nuevos tratamientos y más de 60 ensayos de medicamentos intervencionistas para enfermedades renales raras. NephCure es una organización benéfica pública estadounidense exenta de impuestos 501(c)(3).
