Rare Disease Resources and Education
Cure 4 The Kids Foundation is Southern Nevada’s treatment center for children battling cancer and rare diseases. C4K is dedicated to advancing the treatment and prevention of childhood diseases through clinical excellence and compassionate care.
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. NORD’s site contains excellent information and resources on rare disorders and patient support groups.
A government-run organization dedicated to rare diseases. Their Genetic and Rare Diseases Information Center (GARD) operates under the umbrella of the National Center for Advancing Translational Sciences (NCATS) under the National Institute of Health (NIH). Its aim is to answer questions about rare diseases, share useful information about patient advocacy groups, and to inform about ongoing research trials.
An online network of genetic professionals and patients focused on promoting informational resources and patient advocacy. Genetic Alliance offers many programs, information, and patient-friendly resources.
A European database with high-quality information on rare diseases and orphan drugs, dedicated to gathering and improving knowledge on rare diseases so as to improve the diagnosis, care, and treatment of patients with rare diseases.
A non-profit, nonpartisan organization dedicated to empowering the rare disease patient community to advocate for impactful, science-driven legislation and policy that advances the equitable development of and access to life-saving diagnoses, treatments, and cures.
The Cost of Delayed Diagnosis in Rare Disease: A Health Economic Study
The Undiagnosed Diseases Network (UDN) is a research study funded by the National Institutes of Health (NIH). It seeks to solve challenging medical mysteries and provide answers for patients living with undiagnosed diseases.
Rare Disease Day is February 28th and represents globally-coordinated movement on rare diseases. It raises awareness and supports efforts toward equity in social opportunity, healthcare, access to diagnosis, and therapies for people living with a rare disease.
The Rare Diseases Clinical Research Network (RDCRN) program is designed to advance medical research on rare diseases by providing support for clinical studies, facilitating collaboration, study enrollment, and data sharing.
The Centers for Medicare and Medicaid Services (CMS) is a federal agency that provides information as well as health coverage through Medicare, Medicaid, the Children’s Health Insurance Program, and the Health Insurance Marketplace.
NV-RDAC Archives
Browse NV-RDAC’s previous yearly reports and strategic plans:
