Ectrodactyly-ectodermal dysplasia-cleft syndrome is a rare disorder characterized by ectrodactyly, ectodermal dysplasia, and facial clefting.
Thank you, I put in a request to join your group on facebook!
Hello everyone! My name is Mario and I'm the translation responsable for the p63 EEC International association based in Italy. Please feel free visiting our website www.sindrome-eec.it . We are here for you and we are glad to help you answering all your questions. If you want to contact us, please write to email@example.com or firstname.lastname@example.org . Like I've said, we would be glad to hear from you. Peace and love <3
I noticed that it has been awhile since you have gotten on this site i am hoping that you are still current... my granddaughter was born Jan 16th and even tho i am in the nursing field i had never heard of ECC syndrome maybe someone can enlighten me and the trials and tribulations of this rare issue.
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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