Pemphigus Vulgaris
What is Pemphigus Vulgaris?
Pemphigus Vulgaris is a rare autoimmune skin disease that causes blisters. Most cases can be controlled with treatment, which consists of steroid medicines and other medicines to suppress the immune system.
Last updated 27 Mar 2013, 07:55 PM
27 Mar 2013, 07:55 PM
Hello, I found that this illness can be very lonely. I was diagnosed 1 year ago after months of going to doctors and many many test. I thought by joining rareshare I would have the opportunity to conversate with others going through what I am. I am still very new to this thing and support from others like me is helpful. It's a battle I believe I will over come! Is there anyone who is in remission? If so how long did it take you to get there?
Clinical Trials
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.
- Complete the screening form.
- Review the informed consent.
- Answer the permission and data sharing questions.
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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A wife, mother of 4, grandmother of 8!
Officially dx with Pemphigus, an autoimmune blistering disorder, in Aug 2018. I have other autoimmune issues including PCOS, Hashimotos, and a muscle issue...
I have one child, a girl, and no...
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Incredibly Rare
Created by mrsalibee | Last updated 27 Mar 2013, 07:55 PM
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