Autoimmune Polyendocrinopathy Syndrome Type 1 is a rare autoimmune disorder characterized by autoimmune polyendocrinopathy, candidiasis and ectodermal dysplasia.
|Education||My tip for living with APECED (APS1) is too make sure that you educate yourself about the condition. Most doctors you will see won't know what APECED is and therefore you need to be able to educate them yourself. It's also good if you can carry some research articles to give the doctors to have in your file. As well as needing to educate doctors, you need to know the signs and symptoms of conditions associated with APECED so that you can get treatment ASAP if you develop new conditions.|
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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Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.