A resource developed by the NIH National Center for Advancing Transnational Sciences to provide information about rare diseases for a variety of audiences including patients, health professionals and students. Information for patients and families includes assistance in finding a disease specialist, information on over 6,500 conditions.
This University of Utah resource provides an extensive amount of information from basic genetic information to cell biology, evolution, ecology, precision medicine and more. Students and the general public will find useful and authoritative information.
A tool that provides an online form that can be saved and updated. It can be printed and shared with the family and your healthcare provider. Additional information is provided about encouraging other family members to share information and other frequently asked questions.
A patient advocacy organization that promotes research and empowers individuals and families to bring awareness to rare health disorders. This is an organization your patrons may find very helpful as they grapple with a newly diagnosed condition or face treatment and other challenges.The primary use of NORD is the for Patients and Families tab.
The Genetic Information Nondiscrimination Act of 2008 (GINA) is a federal law that protects individuals from genetic discrimination in health insurance and employment. Genetic discrimination is the misuse of genetic information. This resource provides an introduction to GINA and its protections in health insurance and employment. It includes answers to common questions and examples to help you learn.
National Human Genome Research Institute: Whether an individual's genomic information is being used for research, clinical applications or other uses, it is important to ensure that the individual's privacy is respected. Laws and policies protect the privacy of an individual's genomic information, and there is ongoing debate as to whether further measures are needed.