Primary Angiitis of the Central Nervous System is a disorder that affects the blood vessels in the central nervous system.
Hi Tiffany, I am interested in hearing how things are going for you, if you don't mind. Any info would be great I hope you are well. Sean
Hi Tiffany, Thank you for your reply. I was starting to think I was alone on this one. Sorry we couldn't be chatting about something a little more pleasant. I live in Boston, MA. Its been quite a journey the past few months. I didn't think a headache would lead to this. I ended up having 2 strokes in Nov. then was diagnosed. I did a month of rituximab and am currently taking steroids. I have recovered from the strokes to I'd say 90% which is great. I did go get scans done 2 weeks ago and unfortunately there has been no improvement to the effected vessels, but I'm feeling ok and go about normal life. So my doctors and I are doing a wait and see kind of thing. Keeping a positive attitude! How about your story? and thankyou again take care, Sean
Hi my name is Tiffany Shaw I was diagnosed with pcnsv in 2012. I live in Texas. Where are you at in your journey? Treatment plan....
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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