Resources
If you or anyone you know has primary hyperoxaluria, there are many dedicated organizations, groups and other resources that foster education, support, and research for these diseases.
Download the Drug Development Process Fact Sheet to learn more about the drug development process, including phases of development, timing, and how patients can participate.
Mayo Clinic Hyperoxaluria Center
“The Mayo Clinic Hyperoxaluria Center is a clinical care and research center staffed by physician scientists devoted to the study of primary hyperoxaluria. The goals of the center are to provide a resource for the diagnosis and care of patients with primary hyperoxaluria, to discover factors that predict or determine loss of kidney function in patients with primary hyperoxaluria, and to develop effective treatments.”
Rare Kidney Stone Consortium
“The Rare Kidney Stone Consortium facilitates cooperative exchange of information and resources among investigators, clinicians, and patients, and researchers 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.”
AIRG-France (French)
“The Association was created in 1988 under the leadership of Professor Jean-Pierre Grünfeld and Dr. Ginette Albouze, some patients, their families and doctors anxious to establish networks to exchange the medical knowledge of genetic kidney diseases. The mission of this organization is to inform constituents about kidney genetic diseases and their consequences on the body and the life of patients as well as on organ donation and kidney transplantation.”
The National Organization for Rare Disorders (NORD)
“NORD, a 501(c)(3) organization, is a patient advocacy organization dedicated to individuals with rare diseases and the organizations that serve them. NORD, along with its more than 280 patient organization members, is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research, and patient services.”
Rare Disease United Foundation (RDUF)
“The Rare Disease United Foundation (RDUF) is the nation’s leading rare disease advocacy organization. RDUF works on the challenges facing rare disease patients both locally and nationally. In five years, RDUF has gone from the first state-based, non-disease specific non-profit to the voice of the 60 million people in the United States suffering from the physical, emotional and financial stress of living with a rare disease. RDUF programs target specific issues and approach them with the wisdom, knowledge and passion that comes with living rare.”
Orphanet
“Orphanet is a unique resource, gathering and improving knowledge on rare diseases so as to improve the diagnosis, care and treatment of patients with rare diseases. Orphanet aims to provide high-quality information on rare diseases, and ensure equal access to knowledge for all stakeholders. Orphanet also maintains the Orphanet rare disease nomenclature (ORPHAnumber), essential in improving the visibility of rare diseases in health and research information systems.”
