Trismus-Pseudocamptodactyly Syndrome is a rare genetic disorder characterized by the inability to completely open the mouth and abnormally short muscle-tendon units in the fingers.
as far as i know, which i pretty educated on it. im not aware of any concerns in the heart area but being its a muscle issue maybe something i need to look closer into. i would love to talk with you more. ive been waiting for a long time to find people.. please feel to contact me.
hello my family was just dionosed with this disorder as well but cannot find anyone who knows about it struck in a rut im trying to find out if this disorder can affect the heart muscles any advice would help hope u come back on soon to talk like to see what your knowledge about this if any
i was seeking to make connections with other people who also have this condition in hope to bounce ideas off each other. can anyone help??
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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