Oculodentodigital Syndrome is a rare genetic disorder resulting in small eyes, underdeveloped teeth, and malformation of the fourth and fifth fingers.
My brother has ODD Syndrome, and I'm looking to find out if there's new information out there, or others that we can compare notes with. This syndrome has affected my brother since he was very young, with varying issues from epilepsy to gloucoma (he's blind now) to neurological and bone/spine problems. We would love to find out anything new, or others who have this syndrome.
I'm hoping others with ODDD might read this community group and come in contact with each other. I'm a 55 year old man who has a definite diagnosis of ODDD. I suffer from weakness in my lower extremities, neurogenic bladder and bowel problems. I'm ansous to compare notes with others with ODDD. I'm also participating in a study of the ODDD and conession 47 that is being done in Canada. I hope someone else will join this community.
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.