Trisomy 9 is a rare chromosomal disorder characterized by three copies of chromosome number 9. It can appear with or without mosaicism.
You are probably way far beyond and have now dealt with this on your own. I have been very lucky to find support and a little more information than I ever thought I could. I hope that things are going well and I would love to get this group going so that when people are faced with this, they have somewhere to get a few answers.
It is very hard to find information about Mosaic Trisomy 9 and I would appreciate hearing stories from parents or families of children diagnosed with this condition. Trisomy 9 websites have very little information. Case studies are nearly impossible to find. I really would love to hear from someone that knows anything about this.
I don't know anything about concrete and the affects it has, but the docs told me that my son's chromosome addition and deletion happend while the conception hit and there was nothing I could do or not do, to keep it from happening. Alberta do you have a family member with something associated to trisomy 9?
Would it be possible that Trisomy 9 was caused by exposure to crystalline silica dust- an occupational hazard for those working in the concrete industry? Can someone explain to me in English how crystalline silica binds with DNA and how it affects conception or pregnancy?
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.
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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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