Industry Resources
There  are many  services available throughout the healthcare industry  to aid patients and families. These can be found within pharmaceutical and biopharmaceutical companies, specialized labs, businesses that focus on needs for medical equipment, nutritional foods, medications, and much more.

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PreventionGenetics is a leader in providing comprehensive genetic testing for over 1,000 hereditary disorders. In addition to their diagnostic tests, they also offer a DNA banking service. Their experienced team provides flexible billing options, personalized service and the highest quality testing. PreventionGenetics is CLIA and ISO 15189-accredited.
GeneDx was founded in 2000 by two scientists from the National Institutes of Health (NIH) to address the needs of patients diagnosed with rare disorders and the clinicians treating these conditions. Today, GeneDx has grown into a global industry leader in genomics, having provided testing to patients and their families in over 55 countries. Led by its world-renowned whole exome sequencing program, and an unparalleled comprehensive genetic testing menu, GeneDx has a continued expertise in rare and ultra-rare disorders. Additionally, GeneDx also offers a number of other genetic testing services, including: diagnostic testing for hereditary cancers, cardiac, mitochondrial, and neurological disorders, prenatal diagnostics, and targeted variant testing. At GeneDx, our technical services are backed by our unmatched scientific expertise and our superior customer support.

Coordination of Rare Disease at Sanford

The Coordination of Rare Diseases at Sanford (CoRDS) is a patient registry based at Sanford Research in Sioux Falls, SD. The goal of CoRDS is to tie together patients and researchers as easily as possible to help advance treatments and cures by providing a centralized, international patient registry for all rare diseases. The CoRDS team works with patient advocacy groups and researchers, in addition to patients and their families, to advance research in over 7,000 rare diseases. There is no cost for patients to enroll or for researchers to request access to CoRDS data. All data provided to approved researchers will be de-identified. To learn more visit