SAPHO Syndrome is a disorder characterized by synovitis, acne, pustulosis, hyperostosis, and osteitis.
Name | Description |
---|---|
Synovitis | Synovitis |
Acne | Acne on the face and upper back. |
Pustulosis | Pustulosis is an inflammatory skin condition resulting in large blister-like areas. |
Hyperostosis | Hyperostosis |
Osteitis | Osteitis is inflammation of bone |
Looking for doctors, treatment and medicines that will treat CRMO and stop it's progression.
I am also looking for other people with CRMO. I am searching for doctors, treatment, medicines and hope.
i am also looking for the same url. as soon as i get the url i will post. Tmeems do u know any person who is suffring from CRMO if u know please send me the email i want to interact with the person.
I have been desperately looking for months and I cannot find the "active" part of stop caid for crmo. Can you give me the exact url? All i find is outdated blogs with ads for perfume. Can you please point me in the right direction?
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 katerubino | Last updated 9 Apr 2014, 04:04 PM
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