Carcinoid tumors are slow-growing cancers that usually start in the lining of the digestive tract or in the lungs and can sometimes produce excessive amounts of hormonelike substances, resulting in the carcinoid syndrome.
Hi, all! Just joined. I am a midgut 'noid diagnosed October 2010 by pathology due to liver biopsy after CT in preparation for prostate procedures. Since then have had multiple octreoscans and CT./ Surgery September 2012 by Dr. Fraker at University of Pennsylvania - one of the lesser known NET centers in US. Memmber of ACOR and several Facebook groups focusing on Neuroendocrine tumors. I am a practicing pharmacist and am here to offer my somewhat limited expertise on NETS.
Hi fellow noids, are you new on here too or is this room just quiet as I see only 2 other members besides me? I am in a lot of carcinoid chat rooms to learn and meet other patients. I am midgut newly dx'd only in march, waiting to go to london , ontario to get more detailed dx and primary tumor out.
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.
2002 - Diagnosed with a bronchial neuroendocrine tumour (4cm). Surgically removed; no further treatment required.
2011 - Diagnosed with Ectopic Cushing's Syndrome. No ACTH/steroid...
Start your own! With a worldwide network of 8,000 users, you won't be the only member of your community for long.
Visit our Frequently Asked Questions page to find the answers to some of the most commonly asked questions.
Join Rareshare to meet other people that have been touched by rare diseases. Learn, engage, and grow with our communities.FIND YOUR COMMUNITY
Our rare disease resources include e-books and podcasts
Community leaders are active users that have been touched by the rare disease that they are a part of. Not only are they there to help facilitate conversations and provide new information that is relevant for the group, but they are there for you and to let you know you have a support system on Rareshare.