# NephCure: For Rare Kidney Disease

> Founded in 2000, NephCure is the only organization focused on rare kidney diseases, empowering patients and driving research, treatments, and care\.

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## Pages
- [Clinical Trials](https://nephcure.org/managing-rkd/clinical-trials/)
- [Pediatric Care](https://nephcure.org/intro-to-rkd/pediatric-care/)
- [The IgAN Alliance](https://nephcure.org/intro-to-rkd/types-of-rkd/iga-nephropathy-igan/the-igan-alliance/)
- [Navigating IgAN](https://nephcure.org/intro-to-rkd/types-of-rkd/iga-nephropathy-igan/navigating-igan/)
- [Ways to Give](https://nephcure.org/get-involved/ways-to-give/)
- [Managing RKD](https://nephcure.org/managing-rkd/)

## Posts
- [Kidney Disease FAQs](https://nephcure.org/kidney-disease-faqs/)
- [Letter to the NephCure Community: Update on FDA Decision About Sparsentan for FSGS](https://nephcure.org/letter-to-the-nephcure-community-update-on-fda-decision-about-sparsentan-for-fsgs/)
- [Update on FDA Decision About Sparsentan for FSGS \| NephCure Town Hall](https://nephcure.org/update-on-fda-decision-about-sparsentan-for-fsgs-nephcure-town-hall/)
- [NephCure Unveils New Mission Focusing on New Era of Access for Rare Kidney Disease Patients](https://nephcure.org/nephcure-unveils-new-mission-focusing-on-new-era-of-access-for-rare-kidney-disease-patients/)
- [The FDA Grants Accelerated Approval to VOYXACT, a New Treatment Option for Adults with IgA Nephropathy](https://nephcure.org/the-fda-grants-accelerated-approval-to-voyxact-a-new-treatment-option-for-adults-with-iga-nephropathy/)

## Patient Stories
- [Paul B\.](https://nephcure.org/patient-story/paul-b/): Paul Billedo is a 31\-year\-old Filipino\-American who was diagnosed with IGAN in 2018 and it changed his life in many ways\. Although he has to make many changes\.\.\.
- [Judy A\.](https://nephcure.org/patient-story/judy-a/): In 2019, Judy was diagnosed with Stage 3 CKD\. This discovery came after a routine trip to her Primary Care Doctor\. Although Judy had a history of past of symptoms\.\.\.
- [Maria M\.](https://nephcure.org/patient-story/maria-m/): Starting around 2016, Maria was not able to sleep well, not able to lose weight and she would “swell” from time to time; Maria complained about menopause as the culprit\.\.\.
- [Tyler and Jaxon L\.](https://nephcure.org/patient-story/tyler-and-jaxon-l/): Tyler and Jaxon began their journeys at birth but went undiagnosed for their first few years of life\. We noticed swelling around their eyes and bellies but it was always
considered to be related to seasonal allergies\.\.\.
- [Macy H\.](https://nephcure.org/patient-story/macy-h/): Macy Helm was diagnosed at the age of three with Nephrotic Syndrome in 2009, when she presented with swollen eyelids\.\.\.

## Researchers
- [Sethu Madhavan , MD](https://nephcure.org/researcher/sethu-madhavan/)
- [Dorin\-Bogdan Borza, Ph\.D\.](https://nephcure.org/researcher/dorin-bogdan-borza-ph-d/)
- [Astrid Weins, MD, PhD](https://nephcure.org/researcher/astrid-weins-md-phd/)
- [Ana C\. Onuchic\-Whitford, MD](https://nephcure.org/researcher/ana-onuchic-whitford-md/)
- [Chia\-Shi Wang, MD, MSc](https://nephcure.org/researcher/chia-shi-wang-md-msc/)

## Specialists
- [Laura Gabriela Amador Reyes](https://nephcure.org/doctors/laura-gabriela-amador-reyes/)
- [Kartik Kalra](https://nephcure.org/doctors/kartik-kalra/)
- [Edgar Lerma](https://nephcure.org/doctors/edgar-lerma/)
- [Susan Guelich](https://nephcure.org/doctors/susan-guelich/)
- [Raghunandan Konda](https://nephcure.org/doctors/raghunandan-konda/)

## Teams
- [Imanté Eichelberger](https://nephcure.org/team/imante-eichelberger/)
- [Hillary Frawley](https://nephcure.org/team/hillary-frawley/): Hillary Frawley serves as NephCure’s Digital Marketing Manager who joined the team in November 2023\. With many years of experience in the marketing field and a background in the nonprofit sector, Hillary is a dedicated professional with a strong commitment to making a difference\.
- [Stephanie Novacek](https://nephcure.org/team/stephanie-novacek/)
- [Ana Josa](https://nephcure.org/team/ana-josa/)
- [Rachel Slattery](https://nephcure.org/team/rachel-slattery/)

## Trial Locations
- [REBOOT ITN Trial\- Aurora, CO](https://nephcure.org/trials/reboot-itn-trial-aurora-co/)
- [I CAN Clinical Study for Patients with IgAN\- Atlanta, GA](https://nephcure.org/trials/i-can-clinical-study-for-patients-with-igan-shreveport-la-2/)
- [I CAN Clinical Study for Patients with IgAN\- Boston, MA](https://nephcure.org/trials/i-can-clinical-study-for-patients-with-igan-boston-ma-3/)
- [I CAN Clinical Study for Patients with IgAN\- Shreveport, LA](https://nephcure.org/trials/i-can-clinical-study-for-patients-with-igan-shreveport-la/)
- [I CAN Clinical Study for Patients with IgAN\- Shenandoah, TX](https://nephcure.org/trials/i-can-clinical-study-for-patients-with-igan-shenandoah-tx/)

## Trials
- [The Rare Genomes Project](https://nephcure.org/maintrials/the-rare-genomes-project-2/): The Rare Genomes Project aims to increase rare and undiagnosed families’ access to genomic research, empowering patients to directly accelerate the pace of rare disease diagnosis\. This project was designed to be a direct partnership between researchers and patients, so we can better understand their conditions
- [The TANGO Study](https://nephcure.org/maintrials/the-tango-study-2/)
- [CureGN](https://nephcure.org/maintrials/curegn-hartford-ct/): Cure Glomerulonephropathy \(CureGN\) is a multicenter five\-year observational study of glomerular disease patients\. 
- [NEPTUNE](https://nephcure.org/maintrials/neptune/): La enfermedad por cambios mínimos \(ECM\), la glomeruloesclerosis focal y segmentaria \(GEFS\) y la nefropatía membranosa \(NM\) generan una enorme carga económica individual y social, que representa aproximadamente el 12 % de los casos prevalentes de enfermedad
renal terminal \(ESRD\) \(2005\) en un costo anual en los EE\. UU\. de más de $3 mil millones\. Sin embargo, la comunidad científica cree que la clasificación clínica de estas enfermedades es inadecuada\. Dada la escasa comprensión de la biología de ECM/GEFS y NM, no es sorprendente que las terapias disponibles sean imperfectas\. Las terapias carecen de una base biológica clara y, como han experimentado muchas familias, a menudo no son beneficiosas y, de hecho, pueden ser significativamente tóxicas\. Dadas estas observaciones, es fundamental que se realicen investigaciones que aborden estos graves obstáculos para atender eficazmente a los pacientes\.

En respuesta a una solicitud de solicitudes de los Institutos Nacionales de Salud, Oficina de Enfermedades Raras \(NIH, ORD\) para la creación de Consorcios de Investigación Clínica de Enfermedades Raras, varias universidades afiliadas
se unieron a la Fundación NephCure, NIDDK, ORDR, y University of Michigan en colaboración para el establecimiento de un Consorcio de Investigación Clínica de Enfermedades Raras del Síndrome Nefrótico \(SN\)\.

A través de este consorcio, los investigadores esperan comprender la biología fundamental de estas enfermedades raras y su objetivo es almacenar datos de observación a largo plazo y las correspondientes muestras biológicas para que los investigadores accedan y enriquezcan aún más\.
- [ManNAc Study\- NIH](https://nephcure.org/maintrials/mannac-study-nih/)

## Products
- [Adult NephCure Dark Kidney Sweatshirts](https://nephcure.org/shop/adult-nephcure-dark-kidney-sweatshirts/)
- [Rare Kidney Disease Warriors T\-Shirt](https://nephcure.org/shop/rare-kidney-disease-warriors-t-shirt/)
- [IgAN Awareness Day T\-Shirt](https://nephcure.org/shop/igan-awareness-day-t-shirt/)
- [Kidney Month 2025 T\-Shirt](https://nephcure.org/shop/kidney-month-2025-t-shirt/)
- [Adult Soft\-Blend NephCure Colored Logo T\-Shirts](https://nephcure.org/shop/adults-soft-blend-nephcure-colored-logo-t-shirts/)

## Venues
- [Hyatt Regency New Orleans](https://nephcure.org/venue/hyatt-regency-new-orleans/)
- [Annenberg Community Beach House](https://nephcure.org/venue/annenberg-community-beach-house/)
- [Courtyard Salt Lake City Downtown 345 W 100 S, Salt Lake City, UT 84101](https://nephcure.org/venue/courtyard-salt-lake-city-downtown-345-w-100-s-salt-lake-city-ut-84101/)
- [Philadelphia Marriott Downtown](https://nephcure.org/venue/philadelphia-marriott-downtown/)
- [The Westin O'Hare](https://nephcure.org/venue/the-westin-ohare/)

## Organizers
- [International Society of Glomerular Disease](https://nephcure.org/organizer/international-society-of-glomerular-disease/)

## Events
- [FSGS Community Town Hall](https://nephcure.org/event/fsgs-community-town-hall/)
- [2026 NephCure Patient Summit](https://nephcure.org/event/2026-nephcure-patient-summit/)
- [2025 NephCure Patient Summit](https://nephcure.org/event/2025-nephcure-patient-summit/)
- [Countdown to a Cure NYC](https://nephcure.org/event/countdown-to-a-cure-nyc/)
- [Rare Kidneys on the Hill Day 2026](https://nephcure.org/event/rare-kidneys-on-the-hill-day-2026/)

## Series
- [NephCure Adult Support Group](https://nephcure.org/series/nephcure-adult-support-group/)
- [PARASOL Scientific Workshop](https://nephcure.org/series/parasol-scientific-workshop/)
- [Insurance Access Town Hall Webinar](https://nephcure.org/series/insurance-access-town-hall-webinar/)

## Patient Group
- [Adult](https://nephcure.org/patient_group/adult/)
- [Pediatric](https://nephcure.org/patient_group/pediatric/)

## Sizes
- [Adults](https://nephcure.org/size/adults/)
- [Kids](https://nephcure.org/size/kids/)

## Product categories
- [T\-Shirts](https://nephcure.org/product-category/t-shirts/)
- [Hoodies](https://nephcure.org/product-category/hoodies/)
- [Sweatshirts](https://nephcure.org/product-category/sweatshirts/)

## Product tags
- [NephCure Branded](https://nephcure.org/product-tag/nephcure-branded/)
- [Kidney Month 2025](https://nephcure.org/product-tag/kidney-month-2025/)
- [Awareness Day T\-Shirts](https://nephcure.org/product-tag/awareness-day-t-shirts/)
- [Kidney Warrior](https://nephcure.org/product-tag/kidney-warrior/)

## Event Categories
- [Patient Program](https://nephcure.org/events/category/patient-program/)
- [Fundraiser](https://nephcure.org/events/category/fundraiser/)
- [Advocacy](https://nephcure.org/events/category/advocacy/)
- [Support Group](https://nephcure.org/events/category/support-group/)
- [Research Conference](https://nephcure.org/events/category/research-conference/)

## Optional
- [Sitemap index](https://nephcure.org/sitemap_index.xml)