He did not know he had this until he was in his mid 20's. The doc looked at him and immediately diagnosed him just by looking at his face. No facial hair, baby face, very low energy, etc. The treatment changed his life for the better, thank God. If you have this, I just wanted to let you know that you can find help and it can be treated, at least from my brother's experience. Good luck and God Bless :)
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.
I am a patient with Kallmann syndrome. I was diagnosed at the age of 23 in the 1980's.
I talk to and meet as many fellow patients as I can and am active on patient networks to help try to raise...
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