Diploid Triploid Mosaicism is a rare chromosomal disorder in which additional chromosomes are found in a portion of cells.
My name is Annie. I have a 15 month old daughter that was diagnosed with Diploid Triploid Mosacism when she was only two weeks old. Kileigh has had numerous medical problems, ASD, VSD, and many respiratory just to name a few. She is about five months behind in her development. She only weighs about 15lbs. She is also very short, at only 26 in. long. She just started sitting up alone and rolling over at the beginning of the year. She says mama dada, and ni ni. I think that she has overcome many obstacles and is doing very well. I am glad to see that there are other people out there with the same disorder. Please feel free to share your story or ask questions. That is why we are all here, right?
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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