RARE DISEASE RESOURCES & EDUCATION
Cure 4 The Kids Foundation is Southern Nevada’s treatment center for children battling cancer and rare diseases. We are dedicated to advancing the treatment and prevention of childhood diseases through clinical excellence and compassionate care.
A Comprehensive Report of rare disease diagnosis treated at Cure 4 The Kids Foundation.
The Medical Home Portal is a unique source of reliable information about children and youth with special health care needs
An umbrella organization that brings together smaller foundations focused on orphan diseases. The site contains excellent informational resources on rare disorders and patient support groups.
A government-run organization dedicated to rare diseases. The website aims to answer questions about rare diseases and contains useful information about patient advocacy groups and ongoing research trials..
An online network of genetic professionals and patients focused on promoting informational resources and patient advocacy. The site contains many “patient-friendly” resources.
Navigating a rare disease can require more than 6 years and 17 medical interventions, on average, after symptoms begin, including emergency room visits and out-of-state specialist appointments.
Prepared for: EveryLife Foundation for Rare Diseases
September 2023
The globally-coordinated movement on rare diseases, working towards equity in social opportunity, healthcare, and access to diagnosis and therapies for people living with a rare disease.
The RDCRN program is designed to advance medical research on rare diseases by providing support for clinical studies and facilitating collaboration, study enrollment and data sharing.
Translational science is the field that generates scientific and operational innovations that overcome longstanding challenges along the translational research pipeline.
This documentation will help to understand basic health coverage information so you can help find coverage that best fits your needs.