Our Alliances Grow …
The CFIDS Association has joined the Genetic Alliance, a coalition of more than 600 disease advocacy organizations. You might wonder why we would join a group that has “genetics” in its name. In addition to being experts in the world of genetics, the Genetic Alliance provides access to disease-specific information, as well as translating research into services. It does this by providing the information and infrastructure for advocacy organizations to be efficient research-support organizations. The Genetic Alliance originally focused on rare genetic diseases, but has expanded its scope to serve any disease organization that needs information and infrastructure to effectively participate in research.
By joining the Genetic Alliance, the CFIDS Association has access to all of its resources including: disease-specific search information, wikiadvocacy, family history toolkits, a resource repository and networking with other disease organizations. The Genetic Alliance has also developed a state-of-the-art Biobank, a repository for clinical information and biologic samples. This infrastructure was developed for individual disease organizations to customize and manage. The Genetic Alliance Biobank accepts clinical information (disease-specific and standardized medical information) and biologic samples (blood, tissue) in a standardized and secure manner, complying with HIPAA and other regulations. Membership in the Genetic Alliance is free; however, there is an annual fee to access the resources of the Biobank. We’re learning more about the Biobank as a potential means of augmenting our existing research network and the expanded network that we’re working with NIH to build.
The CFIDS Association is excited to be a member of the Genetic Alliance. Stay tuned to learn more about future opportunities you may have to participate in research that helps us Solve CFS!
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