Rare genetic diseases are difficult: difficult to diagnose, difficult to treat, and, perhaps, difficult to live with. Since they are rare, it may be hard to find a community of fellow sufferers who can empathize and offer advice. Unlike more common genetic afflictions, such as Down Syndrome, Celiac Disease, or hemophilia, the tiny population afflicted with a rare genetic disorder may not have a loud enough voice to be able to effectively lobby for federal funding, simply because those voices are too few to make a discernible impact on Washington. That’s where the Genetic Alliance steps in.

The Genetic Alliance, a Washington, D.C.-based non-profit organization, was founded in 1986 in order to serve as an umbrella organization for genetic diseases. The idea, at the time, was that if the communities of various genetic diseases became a coalition, they would lend a greater, louder voice in favor of disease-specific advocacy. They wanted members interested in, say, additional funding for Paget’s disease, to also be willing to lobby for additional funding for Dowling-Degos disease.

The Genetic Alliance has only increased in functionality since its inception, and now partners with health care providers, academia, and consumer interest groups in order to influence public policy as it is relevant to genetics. The Genetic Alliance now boasts a network of more than 10,000 health-related organizations that includes voices affected by over 1,000 specific genetic diseases. Additionally, they host a repository of research and resources, and their efforts include research into genomics (the study of DNA mapping in all organisms), in order to possibly discover preventative measures and cures for the rare genetic diseases that concern them.

The Coalition for Genetic Fairness is an organization that spun off of the Genetic Alliance and formed in 1997. The purpose of this group is to protect individuals’ rights in regards to genetic information, especially since personal genetic information is becoming more and more accessible to insurance companies and employers. As humans, we all have genetic abnormalities; they are what cause our individuality. The coalition decided that legislation was needed in order to protect individuals from genetic discrimination, so their main focus became the Genetic Information Nondiscrimination Act (GINA), which was enacted into law on May 21, 2008 with bipartisan support.

GINA exists in order to protect Americans against discrimination based on their genetic information in regards to health insurance and employment. It specifically prohibits insurers from denying health coverage to persons afflicted with a genetic disorder, as well as denying coverage or inflating premiums to somebody with a genetic predisposition to a disease.

The work for these organizations is not done, however, with the passage of GINA. The Coalition for Genetic Fairness continues to publicize GINA, with constant revisions and press releases. The Genetic Alliance continues to be a powerful proponent of all things genetic, bringing together diverse stakeholders, and integrating individual, family, and community perspectives in order to improve our health care systems, with the ultimate goal to revolutionize access to information needed to transform information into treatment.

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