Welcome to the Rare Kidney Stone Consortium
The Consortium facilitates cooperative exchange of information and resources among investigators, clinicians, and patients, and researchers in order to improve care and outcomes for patients with rare stone diseases. The consortium promotes ready availability of diagnostic testing, pooling of clinical experiences, and availability of tissue banks in order to advance the science. Our goals are to:
- Establish and expand registries and collaborate with patient organizations for the rapid dissemination of knowledge
- Stimulate generation of testable hypotheses regarding mechanisms of renal injury in these diseases through registry findings, tissue resources, and pilot projects
- Develop cohorts of well-characterized patients for future clinical studies
- Attract and train investigators to rare diseases research in nephrology
News and Upcoming Events
The Rare Kidney Stone Contortium hosts and supports a number of events related to our core disease focus groups. Please check frequently for news and updated information.
We are pleased to announce the 2015 Patient Meeting in New York City.
The event is free to attend and is open to anyone affected by Dent Disease patients, relatives, friends & clinicians.
- Patient & Family Social Gathering Friends Welcome!
- Education Sessions
- Lunch, refreshments and snacks will be provided throughout the day.
Friday October 9
- Evening Meet and Greet
Saturday October 10
- 9:00 am - 2:00 pm Dent Disease Workshop
NYU Langone Medical Center
550 First Avenue, Yellow Pathway
New York, NY 10016
Click on picture for hotel information.
We look forward to seeing you at the DENT Patient Day Workshop!
The Rare Kidney Stone Consortium is an organization of diverse participants and independent efforts representing four major diseases of hereditary nephrolithiasis.
- Director | Dawn S. Milliner, M.D. | bio
- Associate Director | John C. Lieske, M.D. | bio
- Primary Hyperoxaluria Program Director | Dawn S. Milliner, M.D. | bio
- Cystinuria Program Director | David Goldfarb, M.D. | bio
- Dent Disease Program Director | John Lieske, M.D. | bio
- APRT Deficiency Program Director | Vidar Edvardsson, M.D. | bio
- Oxalosis and Hyperoxaluria Foundation
- International Cystinuria Foundation
- Cystinuria Support Network
- Lowe Syndrome Association
- Office of Rare Diseases
- Rare Diseases Clinical Research Network
- National Organization for Rare Diseases
Study Sites and Participating Organizations
- Mayo Clinic
- Wake Forest University School of Medicine
- NYU Medical Center
- University of Colorado Health Sciences Center
- Children’s Memorial Hospital
- University of Chicago
- St. Vincent’s Catholic Medical Center
- University of California, Davis
- Harvard Medical School
- Landspítali University Hospital | Reykjavik, Iceland
- University of Padua | Padua, Italy
- Vrije Universiteit Amsterdam | Amsterdam, Netherlands
- McGill University | Montreal, Canada
- University Children's Hospital | Cologne, Germany
- University of Bonn | Bonn, Germany
- University of Barcelona | Barcelona, Spain