Oxalosis & Hyperoxaluria Foundation
A nonprofit patient advocacy and research organization focused on hyperoxaluria and related disorders. Operates a long-running longitudinal disease registry linked to a biobank, funds academic and translational research, maintains disease-specific databases and patient resources, and organizes patient and scientific meetings and educational programs.
Industries
Nr. of Employees
small (1-50)
Oxalosis & Hyperoxaluria Foundation
Products
Primary Hyperoxaluria (PH) Registry
A longitudinal registry launched in 2003 that aggregates clinical, genetic and family history information and links to biobank samples to support research and improved patient care.
Oxalate food-content database
An online searchable database cataloguing oxalate concentrations in foods to assist dietary management for patients with hyperoxaluria.
Primary Hyperoxaluria (PH) Registry
A longitudinal registry launched in 2003 that aggregates clinical, genetic and family history information and links to biobank samples to support research and improved patient care.
Oxalate food-content database
An online searchable database cataloguing oxalate concentrations in foods to assist dietary management for patients with hyperoxaluria.
Services
Enrollment and longitudinal data and sample collection service supporting clinical and research studies in primary and enteric hyperoxaluria, with controlled research access.
Competitive grant awards and funded collaborations for academic projects addressing mechanisms and treatments, including archiving and dissemination of final reports.
Organization of conferences, workshops, virtual webinars and patient summits to share clinical guidance, research updates and community resources.
A publicly accessible online database cataloguing oxalate concentrations in foods to support dietary management and clinical counseling.
Registration processing and participant support for meetings, including travel grant handling, childcare coordination and accommodation of dietary and accessibility needs.
Application-based cohort programs and online training to develop patient advocates and representatives for engagement in research, policy and community outreach.
Enrollment and longitudinal data and sample collection service supporting clinical and research studies in primary and enteric hyperoxaluria, with controlled research access.
Competitive grant awards and funded collaborations for academic projects addressing mechanisms and treatments, including archiving and dissemination of final reports.
Organization of conferences, workshops, virtual webinars and patient summits to share clinical guidance, research updates and community resources.
A publicly accessible online database cataloguing oxalate concentrations in foods to support dietary management and clinical counseling.
Registration processing and participant support for meetings, including travel grant handling, childcare coordination and accommodation of dietary and accessibility needs.
Application-based cohort programs and online training to develop patient advocates and representatives for engagement in research, policy and community outreach.
Expertise Areas
- Patient registry management and biobanking
- Rare disease natural history studies
- Research grant funding and program administration
- Patient education and community outreach
Key Technologies
- Disease registry systems
- Biobank sample storage and management
- Genetic testing and molecular analysis
- Natural history study methodologies
News & Updates
An international workshop convening patients, caregivers, researchers, clinicians and industry representatives to discuss diagnosis, research and treatment development for hyperoxaluria.
In-person patient meeting planned with surveys and registration to inform programming and accessibility; includes attendee registration and travel grant options.
A multi-day summit for patients, families, clinicians and researchers covering clinical updates, research discoveries and community resources.
A virtual workshop focused on improving access to up-to-date hyperoxaluria information and care.
Launch of the PH Registry in 2003 to collect clinical data and biobank samples for primary hyperoxaluria research.
Raised and committed more than $40 million for hyperoxaluria research and funded over 60 research grants (archived grants from 1997 onward).
An international workshop convening patients, caregivers, researchers, clinicians and industry representatives to discuss diagnosis, research and treatment development for hyperoxaluria.
In-person patient meeting planned with surveys and registration to inform programming and accessibility; includes attendee registration and travel grant options.
A multi-day summit for patients, families, clinicians and researchers covering clinical updates, research discoveries and community resources.
A virtual workshop focused on improving access to up-to-date hyperoxaluria information and care.
Launch of the PH Registry in 2003 to collect clinical data and biobank samples for primary hyperoxaluria research.
Raised and committed more than $40 million for hyperoxaluria research and funded over 60 research grants (archived grants from 1997 onward).