Hereditary Hemorrhagic Telangiectasia – Osler-Weber-Rendu

Government Resources

GOVERNMENT RESOURCES

 

Centers for Medicare and Medicaid Benefits

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.

Health Finder – Your source for offering reliable health information from the Federal Government.

Medicare Rights Center - The Medicare Rights Center works to ensure access to affordable health care for older adults and people with disabilities through counseling, educational programs and public policy initiatives. 

MedlinePlus - Health information from the National Library of Medicine. MedlinePlus provides easy access to health topics, medical dictionaries, directories and publications.

My Family Health Portrait – Provided by the Surgeon General, “My Family Health Portrait” is an internet-based tool that makes it easy for you to record your family health history.  The tool is easy to access on the web and simple to fill out.  It assembles your information and makes a “pedigree” family tree that you can download.  It is private—it does not keep your information.  It gives you a health history that you can share with family members or send to your health care practitioner.

Office of Rare Diseases Research (ORDR) - Affiliated with the National Institutes of Health (NIH) to coordinate research and information on rare diseases. Topics covered include:  rare diseases information, genetic information, patient advocacy groups, patient travel and lodging, research resources, research and clinical trials, rare diseases news, genetic and rare diseases information center, and scientific conferences.

PubMed – Comprises more than 19 million citations for bio-medical articles from MEDLINE and life science journals.  Citations may include links to full-text articles from PubMed Central or publisher websites.

Social Security Disabilities Guidelines - The Social Security and Supplemental Security Income disability programs are the largest of several Federal programs that provide assistance to people with disabilities. While these two programs are different in many ways, both are administered by the Social Security Administration and only individuals who have a disability and meet medical criteria may qualify for benefits under either program