Fanconi Syndrome is a disorder in which the function of the kidney is impaired.
Hello Fanconi Syndrome Community, I work with Dr. Anthony Bleyer at Wake Forest School of Medicine in Nephrology, and our research group studies rare inherited kidney diseases. One that we are currently studying is Fanconi Syndrome. We have a few families that we work with from Canada and we were interested if any of you or your families are from Canada? We are happy to answer any question you may have. You can reply here or you can email us at email@example.com. Thank you, Kendrah Kidd Wake Forest Inherited Kidney Disease Research Team
CoRDS, or the Coordination of Rare Diseases at Sanford, is based at Sanford Research in Sioux Falls, South Dakota. It provides researchers with a centralized, international patient registry for all rare diseases. This program allows patients and researchers to connect as easily as possible to help advance treatments and cures for rare diseases. The CoRDS team works with patient advocacy groups, individuals and researchers to help in the advancement of research in over 7,000 rare diseases. The registry is free for patients to enroll and researchers to access.
Enrolling is easy.
After these steps, the enrollment process is complete. All other questions are voluntary. However, these questions are important to patients and their families to create awareness as well as to researchers to study rare diseases. This is why we ask our participants to update their information annually or anytime changes to their information occur.
Researchers can contact CoRDS to determine if the registry contains participants with the rare disease they are researching. If the researcher determines there is a sufficient number of participants or data on the rare disease of interest within the registry, the researcher can apply for access. Upon approval from the CoRDS Scientific Advisory Board, CoRDS staff will reach out to participants on behalf of the researcher. It is then up to the participant to determine if they would like to join the study.
Visit sanfordresearch.org/CoRDS to enroll.
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