Beals-Hecht Syndrome is a genetic disorder similar to Marfan's Syndrome that affects connective tissue.
Debs, I read your post and would like to share information with you. My son is also six years old and doing well. What is you email address or other means for me to contact you? My email address is firstname.lastname@example.org. Also, post you contact info on the discussion forum and it will appear as does this posting when you sign on. I look forward to hearing from you. Jaime
I have a five year old son with Beals Hecth. Hie is like any normal five-year-old in his likes and behavior. But his abnormal facial features attract odd stares. I would like to speak with others who have Beals Hecth or who has a family member with Beals. My email is email@example.com. I live in New York City.
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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