Schnitzler Syndrome is a rare disease characterised by chronic hives.
Nice to meet you dodabear. I've been experiencing a number of frustrations with treatment. I started on Anakinra about 1-1/2 years ago. It was great but after dealing with severe injection side reactions that persisted for 6 months my doctor change me over to Canakinumab. It works almost as well and only have to inject every 60 days but it's VERY expensive & my doctor told me that my white cell count and red cells are dangerously low.He's switching me back to Anakinra in a few weeks & I'm back on the prednisone until I start the Anakinra. I hate being on the prednisone! I've been looking everywhere for clinical trials but can't find any in the states although I did sign up for a clinical trial pool at OHSU.
I just joined today. I see the last post was over 6 years ago. Are there still any active Schnitlzer Syndrome patients that would like to share information or experiences?
Hello - I would be eager to share information and resources regarding Schnitzler's Syndrome. I'll check here often. I'm sure that if a few of us can begin comparing notes we can make some significant progress in ensuring earlier diagnosis in others and - hopefully - expanded treatment options. Thank you!
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.
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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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