Situs Inversus is a congenital condition in which the major visceral organs are reversed from their normal positions.
I have it and have always gotten sick easier. I also have mild asthma. I have led a fairly normal life, have kids. I just get sick easily. flu shots are a must.
I am searching any kind of information for my baby girl who I am 25 weeks pregnant with, who has been officially diagnosed with Situs Inversus, with normal heart placement. I have been told by our specialist that our girl should be able to lead a normal and healthy life. Any advice? Experiences living with this rarity? Your support is greatly appreciated.
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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