Any disease affecting fewer than 200,000 Americans is considered rare. There are nearly 7,000 such rare diseases affecting nearly 30 million Americans.
CoRDS Registry – Coordination of Rare Diseases at Sanford (CoRDS)
The CoRDS registry is a national and central registry for all rare diseases. Individuals who are undiagnosed are also eligible to enroll in CoRDS. The goal of CoRDS is to create a central resource of data on rare diseases to help accelerate research into rare diseases.
CoRDS houses contact and clinical information on individuals who have been diagnosed with a rare disease with the goal of providing opportunities to participate in clinical trials and other research opportunities.
Website: CoRDS Registry
Genetics Home Reference – Your Guide to Understanding Genetic Conditions
The National Library of Medicine’s web site for consumer information about genetic conditions and the genes or chromosomes related to those conditions.
Website: Genetics – Your Guide to Understanding Genetic Conditions
National Organization for Rare Disorders (NORD)
A non-profit organization dedicated to helping people with rare, “orphan” diseases. NORD is committed to the identification, treatment, and cure of rare disorders through programs of education, advocacy, research and service.
Website: National Organization for Rare Disorders
Rare Patient Voice
Providing patients and caregivers with rare diseases an opportunity to voice their opinions through surveys and interviews to improve medical products and services.
Website: Rare Patient Voice