TNF Receptor Associated Periodic Syndrome (TRAPS) is a rare disorder characterized by periods of fever and chills along with abdominal pain, nausea and vomiting, appendicitis-like bowel obstruction, pseudocellulitis, and localized myalgia of the trunk or limbs.
If anyone has pictures they would like to share on the Foundation website or share their story please email me @ stopcaidnow.com Lisa Moreno-Dickinson CEO/President for Stop Childhood Auto Inflammatory Diseases www.stopcaidnow.com
Hi TNF Community, I just wanted to introduce myself and my Foundation. Please visit the site when you have a moment http://www.StopCAIDnow.com I just posted Project 1 which is very exciting for all of us touched by these Auto Inflammatory Diseases. Lisa President/CEO of StopCAIDnow
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'm the mother of two young daughters who have been diagnosed with TRAPS after symptoms appears when older was 18 months old. My eldest daughter has EDS-V and my 2nd eldest has...
I am a 25 yr old female, recently (August 2011) been diagnosed with TRAPS. Recently started Kineret (anakinra) injections on 16 Jan 2012
I live in the UK, my...
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