The National Organization for Rare Disorders (NORD) is a patient advocacy group serving individuals with rare diseases and related organizations. The website is full of information and resources for over 12,000 rare disorders. This highly recommended website includes a wealth of accurate and detailed information and materials for patients and families, advocacy organizations, industry members, clinicians and researchers, and aspiring volunteers.
The National Down Syndrome Society serves as the national advocacy group for people with Down syndrome and their loved ones. The website focuses on helping people with Down syndrome and their families live throughout life with Down Syndrome. The content includes some resources for families, including resources for expectant parents, updates on current research, and a helpful section featuring employment resources for employers as well as those affected. This site is recommended for patients and families seeking information about coping with the many challenges faced by those with Down syndrome.
MedlinePlus - Metabolic Problems is a good starting place for those interested in learning about disorders of the bodies metabolism. The section includes a medical encyclopedia and links to a variety outside resources that discuss many of these rare disorders. This MedlinePlus section is recommended for information provided by some of the most authoritative and reputable sources in the medical field.
MedlinePlus - Genetics/Birth Defects is a good starting place for those interested seeking information about the more common birth defects and genetic disorders. The section includes a medical encyclopedia and links to a variety outside resources that discuss many of these rare disorders. This MedlinePlus section is recommended for information provided by some of the most authoritative and reputable sources in the medical field.
GARD is a government website offering a comprehensive array of information for individuals & families living with rare diseases. There are an abundance of rare disorders represented with enough information and resources about each one to assist people living with these diseases. This highly recommended website includes informative materials for patients and families, advocacy organizations, clinicians, and researchers.
The Cystic Fibrosis Foundation is the web's go-to resource on cystic fibrosis (CF), a genetic lung condition. The site covers virtually all aspects of life related to CF in engaging and consumer-friendly language. Not only that, but the site's videos and illustrations, tools, and resources are particularly helpful. It is recommended as an indispensable CF resource for patients, caregivers, and providers.
The Alpha-1 Foundation allows users to learn about alpha-1 antitrypsin disease, a genetic disease affecting the lungs and liver. The website covers testing and diagnosis, symptoms, treatment, and management. This nonprofit has strong advocacy roots and offers many resources for children, adults, medical professionals, and researchers.
UpToDate is recommended as a physician-level health information and research. This section allows patients and caregivers to search, but not browse, the consumer health content for information available for free. Although topics here are covered in good depth, most of the more detailed information is only available to subscribers.
National Alliance for Caregiving addresses all aspects of caregiving and includes brochures summarizing research and academic reports. There is information about relevant legislation, how to establish and sustain a family caregiving coalition, and incorporate technology into caregiving. The site is recommended as a resource for people interested in research about and the current status of care-taking in the USA, although there is little information for actual caregivers.