Oculofaciocardiodental Syndrome is a rare disorder causeed by the deletion of the BCOR gene affecting the eyes, face, teeth, and heart.
Hello Amy I know it's been awhile since your post but I wonder if you have found our group on Facebook? OFCD awareness group. There are roughly about 30 families world wide that are effected by OFCD and can help answer questions for you within minutes. You should take a look into it.
I wanted to hear what others have experienced with dental work associated with OFCD.. I have a 10 year old that is scheduled for 6 extractions and the removal of a supernumery tooth (extra). With the characteristic of delayed eruption and no clear indication as to when the permanent teeth will come in. . .I'm not sure what to do? Thoughts anyone? We are told the baby teeth are impeding the perm teeth from erupting. ????
All needs for your dental laboratory in one place: drives, handpieces, equipment, extraction systems, CAD / CAM systems, dental articulators, facebows and functional diagnostics.
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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Created by Melisquent | Last updated 9 Nov 2015, 09:29 AM
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