Arachnoiditis is a rare neuropathic disease caused by the inflammation of one of the membranes that surrounds the nerves of the central nervous system.
Are you a zebra? Find your herd!
Arachnoiditis patients have more in common with other Rare Disease patients than you think! This month is Rare Disease month and Feb 28, 2018 is #RareDiseaseDay. Zebras welcome here: http://www.livingwithraredisease.com/2018/02/health-related-quality-of-life-study.html
Hi everyone. I am Tammy. I live in Delaware. I found out I have this after having my MRI's reviewed by an AA doctor. He is world renowned, perhaps you have heard of him, Dr. Forest Tennant. I am looking for a specialist closer so I can get an 'official' diagnosis. It really didn't surprise me because of my symptoms and talking to others on a pain forum I go to with AA. I have a wonderful pain management doctor here who is so kind and doesn't treat you like your'e an opioid seeker. I haven't seen him since I got this information from doctor Tennant. I'm praying he knows what it is. I also have syringomyelia, neuropathy and rheumatoid arthritis. I have been denied by SSDI twice, which is ridiculous. i hope to connect with those who understand and possible receive treatments. Thanks for reading. Have a pain free as possible day.
Hi everyone. My name is Beat, I am from Switzerland and I am suffering from Arachnoiditis. There are many uncertainties about this disease and especialy here in Europe, it is an unknown. I am hoping to connect with patients or relatives of patients to explore the possibilities of treatment and more. Looking forward to get connected.
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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